Reflections (part 1 of 3)

“In the golden city of the heart dwells The Lord of Love, without parts, without stain.”

The Upanishads

I remember the first time it rained in our basement.  It was spring time.  I had been upstairs in my “office,” which is really a small breakfast nook behind our kitchen, happily tapping away on my computer keyboard into some blog post, when it suddenly occurred to me that the clothes in the washing machine needed to be put into the dryer.  And I had come downstairs to take care of this task to find it raining in the laundry room.

Now, our “laundry room” is really an unfinished part of our basement, complete with grey, cinder block walls (the actual foundation of the house), crumbling concrete floors, and a spectacular view of pipes, wires, furnace ducts, and toilet drain.  And the only thing that bothers me about this “laundry room” is that it also doubles as Shane’s home office, which he works out of, for his actual job, all day long, Mondays through Fridays.

I’ve tried to talk Shane, repeatedly, into moving his office upstairs into my breakfast nook instead, because he would at least have some light, and because I can put my little desk any old place and be just fine.  But he has consistently declined my pleading for one reason and one reason only.  Our kids are loud, especially when they’re all at home during summer vacation (Cale’s screaming, in particular, could be extremely detrimental to Shane’s business calls), and my breakfast nook doesn’t even have a wall between it and the kitchen, much less a door.

I’ve also brought up the idea of Shane using one of the kids’ bedrooms for an office.  However, since two of our children already share a bedroom (and putting all three of them into one bedroom would probably result in someone being seriously injured), this idea was quickly ruled out.  And he can’t work out of the middle of the living room because, again, it would be too noisy.  And our own bedroom is barely big enough to walk around our bed in.  His big desk doesn’t even come close to being able to fit anywhere in there.  In short, the breakfast nook and the “laundry room” are the only options, so Shane just stays in the “laundry room,” day after day, week after week, month after month after month. 

At first I couldn’t figure out what was going on.  I mean, it wasn’t an ordinary leak.  With an ordinary leak, you can see which pipe or drain the water is coming from.  But the water seemed to be coming from the entire ceiling, and it was pouring down in sheets onto everything in the room.

I looked at Shane, who was staring at me wide eyed.  He was on a business call, speaking Greek as usual, “Well, the M4230 needs to have SCR in order to be EMV compliant, and I checked with ESI Links, and we need to have GCAG and GFSG certification for the M4230 in order to take full advantage of its IP connectivity capability.”

People ask me what my husband does for a living, and I say, “He works for American Express.”

The next question is always inevitably, “Oh yeah?  What does he do for American Express?”

“I have no idea,” I reply, “But if you ever figure it out, could you let me know?”

I actually looked, for a moment, out the small basement window above the washing machine.  I expected to see it raining outside, and was trying to figure out how the entire roof could be leaking that badly (a blond moment – I was in a basement for crying out loud).  And that’s when I realized that the water had to be coming from the bathroom, which is directly above the “laundry room.”  I put two and two together and finally realized that Cale was flooding the bathroom.

I grabbed an arm load of towels and ran upstairs to the bathroom.  And, sure enough, the entire bathroom floor was covered in at least half an inch of water.  I looked at my son.  He was sitting in the bathtub with a giant shampoo bottle (which he had apparently emptied the shampoo out of somewhere).  He had clearly been using it to pour water onto the floor with, and he had just finished filling it with water again as I came into the room, so he looked up at me and smiled his gorgeous little smile while he emptied the entire bottle right onto the floor.

Cale has been obsessed with water this summer.  I mean, he’s always been obsessed with water, but he didn’t used to flood the bathroom.  Then, he only occasionally flooded the bathroom.  And now, he floods the bathroom every time he has a bath. 

The solution seems relatively simple, don’t you think?  Stop giving him baths.  The only problem with this idea is that all he wants to do is take baths.  He pulls me to the bathroom repeatedly (and he won’t stop) until I turn on the tub faucet.  And the only time, all summer long, that Cale has NOT been destroying the house, hurting himself, or hurting other people, has been when he’s been in the bathtub. 

He’s flooded the bathroom so many times now that the floorboards underneath of it will no longer dry out.  I’m actually afraid of them rotting to the point of the entire bathroom landing with a crash on top of Shane.  Therefore, I’ve been insisting the Cale play in water outside a lot these days.  He has a wading pool in the back yard, and a garden hose of his very own.  But the only problem with Cale playing in water outside is that he can’t be left outside un-supervised, even though I have two other children and dishes and laundry (and I’ve been wondering if I shouldn’t just kiss my writing “good-bye” entirely).

The last time Cale was left outside alone for a few minutes, he shattered the bowl of water that Alden had left outside for the dog.  It hadn’t occurred to us that Alden would use a giant glass bowl to give the dog water in, and we hadn’t noticed it.  So when I came outside to check on Cale, I found him sitting in the middle of a bunch of broken glass, naked, bleeding, and pulling shards of glass out of his own feet.

This happened just four days after Cale hurt his leg.  And the leg thing was so strange.  I had put Cale to bed at his usual bed time when, about an hour later, I heard him screaming, so I went in his room to check on him.  He was lying on the floor in the middle of the bedroom (which is nothing unusual actually), and I realized that he had a temperature.  I cuddled him for awhile, but I eventually went to bed myself because he’d stopped crying, and because I figured that he just had a flu bug or something. 

It took us another day and a half to figure out that Cale had hurt his leg.  Shane, who had had the same flu bug the week before, told me that his whole body hurt when he had that particular bug.  Alden and Isabel, who had both had it recently as well, told me the same thing.  So it didn’t surprise me that Cale cried anytime we tried to move him (to change his diaper or sit him up so that he could drink water).  And it wasn’t until his fever broke and we knew that he really should be feeling better, yet he still cried anytime we tried to move him, that something else was wrong. 

It was the doctor who confirmed which leg Cale was favoring (all I knew for sure was that Cale wouldn’t stand up, but I suspected that something was wrong with his right leg in particular because he seemed to cry extra loudly when I lifted it during diaper changes).   

The doctor x-rayed the leg from his hip to his ankle, but nothing was broken.  So he told me that it must just be a sprain or something, and to alternate Tylenol and Motrin.  I told the doctor that I wanted to know exactly what was sprained, but the doctor told me that since Cale is still non-verbal, there was really no way to know.

The only thing I can figure is that Cale, after I’d put him to bed that night, must’ve climbed up on top of Alden’s dresser and then either jumped or fell off of it.  You see, he had never done this before.  In fact, Alden keeps his toys on the shelf above his dresser so that Cale can’t get into them.  And some of these toys were on the floor when I went in to check on Cale that night, but I had just figured that Alden had gotten them down earlier.  It might’ve been Cale though.  It’s the only time that I can think of that he could’ve hurt his leg without me noticing. 

I can’t think at all about the fact that Cale spent that entire night alone with a fresh sprain and no painkillers, and that he had the flu on top of it for the next two days in a row, during which his mama picked him and moved him around and pushed his legs up to change his diaper, etc., all without knowing that his leg was hurt, because the very thought of it causes me instantaneous vomiting.  And just two days after the doctor’s visit, during which Cale was still limping heavily on that leg, we dug the shards of glass from the water bowl out of his feet.  And the leg thing had happened just two weeks after Cale had gotten out of the hospital.  It’s been one thing after another, it seems, all summer. 

Needless to say, Shane and I have become so exhausted from being on “red alert” every moment of every day (particularly since we still don’t have any respite care), that sometimes we actually just let Cale flood the bathroom.  We literally put him in the bath tub with a big cup (so that he doesn’t pour out the shampoo), turn on the water, and leave the room, because it’s the only time that he’s safe and occupied enough to not cause any real trouble.  And I just keep praying that the bathroom doesn’t fall on Shane.

My mother-in-law’s nephew, the one who has Autism and is still non-verbal even though he’s nineteen years old now, has just lost his mother.  She passed away a few weeks ago.

I asked my mother-in-law if this nephew had gone to his mom’s funeral, and my stomach sunk when she replied, “Oh, no.  He doesn’t know that she’s passed away, nor would he understand it if we told him.”

This makes sense I suppose.  Even if they did tell him, he wouldn’t understand the words coming out of their mouths, much less the concept of death.  So this sweet boy’s mom is just gone now.  And she’s going to be gone forever.  And he can’t even have an explanation.

My mother in law and I talked, for awhile, about the group home that this boy lives in.  And my mother-in-law finally said to me, “You do know that you guys will be facing this with Cale soon, don’t you?”

I just looked at her.  She seems to be bringing this up a lot these days.

“By the time my nephew was nine years old,” she continued, “he couldn’t be left alone with his mother at all without him injuring her.  That was when they gave up custody of him to the state so that the state could put him into a group home.  And, even though it was a very difficult thing for them to do at the time, it was the best decision that they could’ve made for him and for themselves.”

I touched the chip in my front tooth with my tongue, and recalled the day (which was about three weeks earlier) when Cale kicked me in the face as hard as he could with both feet as I was trying to get his seat belt on him in the car.  It hurt really bad, and I tried to imagine what Cale (who’s going to be six years old in a couple of weeks) would be like if he was the size of his nine year old brother.  I cringed.

It always bothers me when my mother-in-law talks this way, because, out of all of the people in our family with Autism, Cale is the only one that she ever compares with this nephew.  Of course, Cale’s also the only one, besides this nephew, who’s stayed non-verbal until the age of six, but it still bothers me.  And it took me a couple more weeks to realize that my mother-in-law, after everything that has happened over the summer, is probably done just talking about it. 

I think that my mother-law-in consulted her brother (the father of the nephew in the group home) at a family reunion we had a few weeks ago (during which I had to take Cale home because he was hitting the other children and banging his head onto ground), regarding how to go about getting Cale into a group home.  The reason I think this is because, right after the family reunion, Shane’s sister let us know that she was looking for group homes that could take Cale now.

Is Cale really that profoundly Autistic?  Or, maybe it’s not the Autism at all, but the “developmental disorder” that Cale has been diagnosed with in addition to the Autism.  You see, Autism presents a whole series of challenges in learning how to function in this world, but “Autism” alone doesn’t mean that the child will never learn how to function.  Many children with Autism learn how to function in spite of the challenges.  So, why doesn’t Cale seem to be able to?

The word “disorder” instead of “delay” implies that Cale’s problem is a fixed and permanent thing.  The only problem with this diagnosis, in my mind anyway, is that it followed a ten minute long evaluation, during which the doctor didn’t run any tests, but only stared at Cale before assigning him the forever condemning “developmental disorder” in addition to the Autism.  I do plan on getting him a proper diagnosis some day, once (or if ever) he’s able to actually participate in the required testing.   

Is Cale’s problem, whatever it is, really that bad? – is the real question.  I wonder this often.  And the answer is that I don’t know, but I do know that if he never gets therapy, the way that this nephew never got therapy, then the answer will always be a big, fat, irrevocable YES. 

Our state caseworker came to our house to makes some changes to Isabel’s therapy plan.  And I told her about all of the things that have happened with Cale this summer - about how Cale was hospitalized (which I wrote about in previous blog posts), and about how he hurt his leg, and about how I found him sitting naked in broken glass, and about how he’s pulled all of the pictures off of my walls and shattered the glass in them, and about how he’s repeatedly hit me and kicked me in the face, and about how the only peace and quiet we’ve had all summer long has been while he’s flooding the bathroom.  She reminded me that she had come over to talk about Isabel.

I told her that Cale had roughly ten words that he could communicate with at the time that we moved here to Montana last December, because he had gotten multiple hours of therapy every week (thanks to the state of Arizona) for nearly two years.  He had gotten to the point of being able to attempt an imitation of any word actually, but there were only about ten of them that he actually knew the meaning of.  He was also playing with toys, following a basic routine, and wearing clothes.  And he was toilet trained too (well, he would pee in the toilet, but we hadn’t figured out how to get him to poop in the toilet yet).

I figured that once all of his therapy stopped, that Cale’s progress would stop as well, but only until we could get services set up for him here in Montana.  I reminded the caseworker that we applied for a Medicaid waiver for Cale the moment we got here, but that we’ve been on the damn waiting list for nearly eight months now and there’s still no sign of him being selected. 

I also reminded her that our medical insurance doesn’t contribute one single penny to any Autism therapies (American Express self-funds its medical insurance, which means that they’re not technically a medical insurance company, which means that they’re exempt from the state laws that require medical insurance companies to cover Autism therapies), and that since the out of pocket cost of Cale’s therapies come in at around $4,000 per month, which we don’t come anywhere near being able to afford, we’re entirely dependent upon Cale receiving a Medicaid waiver in order for him to get the therapies that he needs.  She knew all of this already, of course.  She reminded me again that she had come over to talk about Isabel.

I explained to the caseworker that I knew Cale would cease to progress without therapy, but that I had never realized how much he would actually regress without therapy.  Not only is he no longer verbalizing at all (imitation or otherwise, all of the words are completely gone), but he’ll no longer play with toys, follow a basic routine, or wear clothes.

I told her about how I’ve tried to keep clothes on Cale this summer.  I put them on him, and he takes them right off.  So I put them back on him again, and he takes them right off.  So I put them back on him again, and he takes them right off.  So I try to hold the clothes on him, and he screams and hits me in the face, or, while I’m trying to wrestle pants onto him for the fifteenth times in ten minutes, he kicks me in the face as hard as he can with both feet.  So I go and check myself for more broken teeth while he takes his clothes off again.

And the toilet training?  Well, since he’s naked all the time now, he just pees right on the floor.  I cannot even begin to describe to you what the carpeting in his bedroom smells like.  I invited the caseworker downstairs to Cale’s bedroom for a sniff, but she reminded me again that she had come over to talk about Isabel.

“It’s like having a poorly trained dog.  No, it’s worse than that, actually, because dogs don’t pull the pictures off of your walls and shatter the glass in them.  It’s like having a monkey.  A BIG and very poorly trained monkey.  No, I’ll tell you what it’s like,” I said to her, “It’s like having a feral child, right in the middle of a loving family.  It’s the weirdest damn thing that you can imagine.  And now he seems to be injuring himself whenever nobody is looking, yet we do have two other children (one of whom has Autism also) who occasionally need tending to as well.  So how is it that the state can just sit back and completely ignore this?  I mean, I don’t want to sound like I think that we’re entitled to help or something, because I don’t think that.  But at what point do we, as parents, have a legal obligation to inform CPS of the things going on in our home?”

She stopped reminding me that she had come over to talk about Isabel.

“Our family is looking for group homes for Cale as we speak,” I continued, “And from what I understand, we would have to give up custody of Cale to the state in order to get him into a group home because it would be too expensive for us to pay for ourselves.  So if the state doesn’t kick it into gear soon, and if my family develops any say in the matter, then it’s quite possible that the state will soon be receiving custody of this mess.  And I know from all of Cale’s past experience with getting therapy that there’s absolutely NO NEED FOR HIM TO BE DETERIORATING LIKE THIS!”

I breathed.  And I calmed.  And I decided to stop talking to her as if this was her fault personally.

“I’d like the people up in Helena to know exactly, detail for detail, what they’re ignoring here,” I continued, “ And I’m going to start with daily informative phone calls.  Would it be better for you to harass them with these or should I?”

 She told me that we would both do it, God bless her.  She could see that I was in no fit state to discuss Isabel.

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.”