Crazy-makers

Cale has been selected for a Medicaid Waiver!!!!  YEAH!!!!!!!!  IT’S ABOUT GOD DAMNED TIME!!!!  THAT SOUNDS UNGRATEFUL!!!!  WHAT I MEAN IS - THANK YOU, THANK YOU, THANK YOU, THANK YOU, THANK YOU!!!!  And things have been so very good around here.

We’ve gotten nearly all of Cale’s therapies set up already, and, between this and his medication (that we no longer have to worry ourselves sick about how we’re going to pay for) Cale has almost completely stopped hitting us and kicking us and destroying our house.  Not only that, but I believe that I have probably found the single best speech therapist on the whole face of the entire planet.  Cale is imitating words (and songs and phrases) again already!!  And I cannot even begin describe to you how magnificent it’s been to hear.

The wait for the Medicaid Waiver (particularly this past summer) nearly landed Cale in a group home.  But that’s all over with now, and the only damage remaining is that I still have one chipped front tooth.  I should be able to get that fixed soon though.

I’m afraid that I’ve been so busy lately with all of the paperwork, and with all of the meetings with our caseworker (who’s been an absolutely fantastic advocate for us), and with all of the running Isabel AND Cale BOTH (finally!) to all of their therapy appointments (we’re back to four different therapies per week EACH – that’s a total of eight therapy appointments per week, just in case you couldn’t do the math yourself - my husband has been telling me lately that I’m a tad too explanatory in my writing – Shane is my most adorable crazy maker, although there are a few others around here that are pretty cute too), that I haven’t had much time at all for writing.  And, what little time I have had for it, I’ve been working on my book instead of updating my blog.  So I thought that I should give the blog a quick update here on this gorgeous, snowy afternoon.

It seems like anytime I start working seriously on my book, I’m interrupted.  This week, for example, after an entire week straight of daily interruptions - two appointments with the psychiatrist, three appointments with the therapists (so far), one meeting with our state caseworker, and one half day of school (and I can’t seem to get any writing whatsoever done while my kids are at home) – I had finally gotten everybody off to what was supposed to be a full day of school, and I didn’t have to take anybody to any therapy appointments until later in the afternoon.  Therefore, I had an entire, uninterrupted school day in which to write.

It was around 10am when I got the call, and I had only been compiling stuff for about an hour.  By “compiling stuff,” I mean that I actually have an obnoxious amount of material already.  And this has been a bit of a surprise.  Somebody asked me once, fairly recently, how many chapters I have written for my book, and I answered that I only have the first three chapters written.  But the truth, I’ve discovered, is that I have literally hundreds of pages already.  And I discovered this because when I told another friend of mine, very recently, that I really needed to get working on my book again, she said, “Oh, you’re already writing a book.  You just don’t know it yet.”

She was talking about my blog, I think.  And this got me wondering if she might be right.  There’s a ton of material in the blog about my kids, but I also have a bunch of material that isn’t in the blog, material that I’ve been “processing” in spurts here and there as things have been coming back to me over the past couple of years.  And, between the two, I’d bet that I have roughly half of a coherent story already.

It’s kind of disgusting, when you think about it, that I’ve spent so much time writing about myself and my own life.  But this kind of thinking is a trap, I think.  I tend to tell myself that nobody’s going to care.  “Who do you think you are anyway, that anybody would want to read a book about your life?” is what my “inner voice” likes to say.  But this is just ego in reverse – rather than thinking that everybody’s going to care, thinking that nobody’s going to care.  It’s still extreme self-centeredness, while the truth is probably actually somewhere in the middle.  Some people might care, and others might not.  Therefore, I really try to respond to this “inner voice” with, “Hey, if nobody cares, then nobody has to read it.”

I don’t write in this blog so that it can be read, and I’m not writing a book so that it can be read.  Don’t get me wrong, I get really happy when I check the counter on this blog.  I had to stop doing it, in fact, because my head was getting too big.  And I would be equally as happy if my book (when it’s finished) was read too, especially if somebody could actually get something out of it.  But that’s not really why I’m doing it. 

You see, I’ve never had any kind of a dream about being a writer.  My dream was to be a painter.  I even went to college for this and, since I turned out to be a relatively mediocre painter, ended up with an education degree so as to actually be able to do something with my knowledge of Art.  And, as it turned out, I was much more gifted at dealing with “behaviorally challenged” kids than I ever was as an artist.

I was a high-school Art teacher until my career was uprooted by my children with Autism, whom no day care center, rightfully, in the entire city of Phoenix, Arizona, was willing to take care of (my kids couldn’t even make it through an hour in the babysitting room at the gym before getting kicked out).  And this was how I became a stay at home mom.  It had literally never even occurred to me be a writer, instead of a painter, until I had kids who, were they ever allowed anywhere near paint, destroyed the carpeting with it.  But I found that I had to have a creative outlet of some kind (and a very tidy one), so I started writing.

I was a mediocre artist, so there’s nothing to say that my writing is, or will be, any better.  But, then again, that’s not really the point, is it?  The point is that I have had Autism in my life since the day my brother was born (since I was a year and a half old), and our story (about our growing up, and about the lives of my own children) is a story worth telling.  So, even though I may be telling it to God, and God alone, I’m still going to be telling it.  I like to think of it as my own, personal little gift back to God, since he’s always done so much for me.  And I realize that this probably sounds perfectly cheesy, but I can’t really say that I care.  I mean, my baby is getting therapy again, getting nearly all of his little needs met.  Therefore, God absolutely deserves some of my time.   

It’s all sort of “Frank McCourt – esque” so far.  By that I mean that it’s all still gorgeously tragic, and I suspect that some of it will probably have to stay that way.  But this has presented me with a fairly serious problem, one that’s been quite a little road block for some time now.  It’s been hard for me to write about my brother.

I haven’t known how my brother would feel about being written about.  That’s why I haven’t put much about him in the blog.  Well, that and the fact that the blog is called The Spears Family Project, and my brother isn’t a Spears.  But there are others, too, whose feelings I’m concerned about.  I mean, how would you feel if you were written about in a non-fiction story, without your permission?  It might be grounds for the immediate dismissal of any kind of relationship with the writer, don’t you think?  So, even though I’ve already been writing about my brother (and a few other people) for some time now, I haven’t shared any of this material.  And, until recently, I haven’t been sure that I ever would.

I know that, from a literary standpoint, you’re not really supposed to ask a person’s permission before you write about them, because it may exact an influence on what you’re willing to say.  But I had to ask my brother’s permission.  Everyone else in the story is probably just going to have to live with it, but my brother, since quite a large chunk of the beginning of the story is about him, needed to be asked.  And the funniest thing happened when I asked him.

You see, my brother has high-functioning Autism (which, thirty five years ago, while the proper diagnostic tools weren’t yet readily available, went left undiagnosed).  I had completely forgotten that the only people on the planet that my brother really cares all that much about is me, my parents and grandma, and a few of the people that we went to camp with in the summers when we were kids.  So, when I told him about all of the stuff that I had already written about, but hadn’t yet shared with anyone because he was actually diagnosed with PTSD at one point because of some of it, he said to me, “I think you should just write it all, and get it published if you can.  And I don’t think you should care what anyone thinks.”

So the book is on.  I’m more excited about it than I’ve ever been before, to the point that I’ve been working on it for at least a little while every day no matter what, and to the point that I actually became rather irritated when the school nurse called me at 10am, after I’d finally gotten everybody off to full day of school and was left with whole, uninterrupted school day in which to write, to tell me that Isabel had head lice.   

“WHAT?!!!!” I yelled.

Now, I can handle a lot of things.  I can handle screaming and head banging and shattered glass and poop smeared on the walls.  But tiny, parasitic head bugs?  Sorry.

“SHAAANE!!”

He did the shampoo treatments on everyone in the family (well, I did his) even though Isabel was the only one with an infestation, while I washed and steam cleaned everything single thing in the entire house.  It ate up the whole day - stupid little parasitic crazy makers.  But, oh well.  I guess I’ll just keep trying.  Oh, and here’s a little tip – about fifteen drops of tea tree oil in the bottle of shampoo that your child uses daily, will forever prevent head lice no matter who, or what, your child is around.  NOW they tell me.   

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.