I don't what to call this one.

I gave a talk a couple of weeks ago.  And I won’t say where or why here, but I will say that I talked about making peace with my worst fear. 

At the time, I had no idea why I was talking about this.  I even thought to myself that there had to be more important things I could be talking about.  But this was where the talk had led, and I’ve given enough talks to know better than to fight this sort of thing.  I needed to just be going with the flow, so that’s what I was doing.

My worst fear is an actual picture in my head.  It’s a fear that, up until fairly recently, absolutely drove the way I treated the people around me – the schools, the teachers, the unending array of therapists, doctors, and psychiatrists, and even, on occasion, my own husband. 

It had managed to sneak its way into all of my relationships actually, and I know this is because I’ve inventoried the hell out of the subject for the past few years.  I’ve even gotten quite specific in the details of the fear itself.  It has to do with my youngest son, Cale’s, future.  Cale is six and a half years old right now, but in my “picture” of his future, he’s fifty years old and living in an institution.

The bad part isn’t that Cale is a fifty year old man who’s still non-verbal and in diapers because he has classic Autism.  And the bad part isn’t that he’s living in an institution.  The bad part isn’t even that there’s nobody there who loves him.  The bad part, for me, is that he doesn’t understand why there’s nobody there who loves him.

His mom and dad have died of old age (his mom from lung cancer because I never could, once and for all, kick the damn smoking habit), and his brother and sister live far away and have their own lives, so they just don’t get around to see him very often.   And he doesn’t understand why his mom and dad aren’t there.  He doesn’t understand why there’s nobody there who loves him, and he’s all alone.  And for years and years and years yet, he’ll be all alone.

That’s my worst fear.  I think I’ve maybe even talked about this in a blog post at some point before.

One day, a woman that I admire very much said to meditate on this fear.  Well, what she actually said was, “Go to the place that hurts and stay there.  Don’t try to fix it or change it.  Just be there.”

I practiced this for a couple of months before the miracle finally happened, because I never could stay there for more than a couple of minutes at a time.  But finally, one day, I was able to stay there for long enough to see what would actually happen next. 

Cale loves water.  He takes at least three baths every evening (and at least eight per day on the weekends – our water bill is ridiculous).  Shane and I have often joked about this being Cale’s “meditation,” but I had never really taken it literally before this.  Cale has two cups in the bathtub with which he pours the water back and forth.  Sometimes he does it for ten minutes at a time, and sometimes he does it for over an hour at a time, all depending on how much “God time” he needs.

In my meditation, I saw Cale sitting in an institution wondering where his parents were.  I saw him wondering why we had left him there.  I could actually see his confusion, could actually feel his loneliness.  This is usually where I stop because I can’t take it anymore.  But this time, I was able to stay there for long enough to see him find a nurse, take her hand, and lead her to a bathtub.

The nurse turned on the faucet for him.  Then he got into the bathtub, his two cups in tow, and started pouring.  And that’s when I actually went into the pouring water.    

Now, what God looks like to me is a church camp that I went to when I was younger.  So that’s who and what I saw in the water.  But I understood that what that meant was that Cale’s own God was in the water (Cale won’t ever get to know what it’s like to go to church camps, or what it’s like to have friends like that, or anything). 

I understood that whatever God is to Cale is what’s inside the water.  But more importantly, I understood that Cale will always have immediate access to God’s comfort and love at any moment he ever wants it.  He’s never going to be alone, and he’s never going to be unloved.

As I was talking about this, I could see this woman sitting in the far back row.  And I kept looking at her because she was keeping perfect eye contact with me.  Everyone else was about half passed out in their chairs.  No one was actually snoring out loud yet, but some were close.  This woman was leaned forward in her chair, however, staring into my eyes, with tears absolutely pouring out of hers.  

Afterward she came up and thanked me for my talk.  Then she told me that she has a son that’s in his twenties now.  He’s still non-verbal and in diapers, and she’s just recently had to put him into a group home.

We hugged and talked and talked and hugged.  The miracle of the situation, however, left me almost as quickly as she did.  I mean, I could see God in it at first.  But I couldn’t keep God in it, if that makes any sense.  This is because all I could think about, for the next two days, were the words “twenties” and “group home.”  So much for all the spectacular peace I’d supposedly made with my worst fear.

The screaming has recently started up again - along with the hitting and the kicking and the pushing and the breaking stuff.  What was a two inch long scratch on my face (thankfully put there the day after my talk) has mercifully healed into a small scab that nobody seems to be noticing.  Make-up is still my friend, that’s for sure.  But there’s going to come a point, and I honestly don’t know how soon, when all the make-up in the world isn’t going to cover up the fact that I have a violent child.

I don’t know what’s going on with him.  If he’d just learn how to talk already, then he could tell me.  But NOOOOOO.  He’s decided to beat the shit out of himself and everybody else for the rest of his life instead. 

Oh, did I mention the self-harming?  He’s got scratches and bruises all over him, put there by himself.  This is what Cale does when you yell, “NO, NO CALE, you can’t hurt people!” or “NO, NO CALE, don’t break that!”  He turns around and starts hurting himself instead.  And he’s been hitting the walls (and other things) so hard lately that I honestly can’t believe he hasn’t damaged his own hands yet. 

What about the Ipad?  Oh, he broke it.  He threw it across the room at school and it didn’t work after that.  And yes, Apple replaced it.  But all of the photographs we’d spent hours taking and downloading into the program, have been lost.  And, frankly, neither Shane nor I have had the energy yet to do it all again. 

Isabel had an appointment with the psychiatrist last Wednesday, but I showed up with Cale instead.  Again.  Poor Isabel – always taking a back seat to Cale.  And poor Alden – always taking a back seat to both Cale and Isabel.  Alden has actually started saying, “God, I hate it at our house.  I hate living with kids with Autism.”

We’re currently trying to teach Alden and Isabel how to block.  “Grab Cale’s fists as they’re coming at you and then, whatever you do, don’t let go of them!!”  And they’re getting lots of practice with this at the moment.  It’s very hard for them to do, though, because Cale is almost seven years old now and he’s getting quite strong.  And he’s sneaky.  He acts like he’s calming, for a second, until Alden or Isabel loosens his/her grip, then he hits him/her in the head again. 

And it always comes back to this.  No matter what we try - no matter how many specialists we see, no matter how much therapy we do, no matter what diet we put him on, no matter how many supplements and pro-biotics and herbal sedatives and psych. meds and b12 shots, etc, we give him – it always comes back to this.  And this is very hard for me to accept, you see, because my daughter, Isabel, has Autism as well.  And I’ve watched her get better and better and better.  But with Cale, there’s never any significant change.

If someone would just tell me, if someone (a doctor maybe) would just SAY that Cale’s never going to get better, if I could just KNOW that, then I could make peace with it and move on.  But nobody can tell me that and still live with themselves, because you just never know for sure.  But I think that this is what the professionals have been trying to tell me, without actually saying it, for some time now.

The psychiatrist just took Cale off the medication that he thinks could be causing the extra aggression, and he’s doubled the one that makes Cale grind his teeth so hard all the time.  God, I’m always worried so sick over all these medications.  But this new psychiatrist seems to know what he’s doing.  He’s going to have us do some genetic studies this summer, just to see if Cale has something more than Autism going on.

“We’re looking at what appears to be Classic Autism (that rare, magic little spot at the very bottom of the Autism spectrum – it’s a label that exists to specify the idea that there’s never going to be significant improvement),” he said, “and that’s probably what it is.  But let’s rule out the possibility that there are other genetic disorders at work here, just so we know for sure there isn’t more we could be doing for him.”

“Yes, lets,” I said. 

It somehow reminded me of the time when all of Cale’s therapists got together and told me that the best we could ever hope for, for Cale, is that he might be able to communicate his most basic wants and needs some day (“eat” and “drink” and that sort of thing, nothing that even remotely resembles real communication). 

I think it was the term “Classic Autism” that made me think of it, because again all I could hear were the words “twenties” and “group home.”  Only I know full well that Cale’s not going to make it to twenty.  Our nephew with “Classic Autism” was nine when they put him into a group home.  He’d become big enough, by that age, to be a significant risk to the safety of others.  Cale’s almost seven.   

This thing is like a big, mean dog that sits on top of me.  And the more I feed it with these kinds of thoughts, the bigger it grows.  Pretty soon it’s so heavy that I can’t get out from underneath it at all.  And it feels like I’m just tired.  Just really, really tired.  “I’m just so tired, so tired,” I keep saying, but the truth is that, by that point, it’s no longer about needing a nap.  By that point I think it might actually be beyond my control.  I was immobilized for two days after I gave that talk and met that woman.  Two days this time.  That’s how big this puppy got.  

I don’t know why I still do this.  I mean, it’s not like any of this stuff is new.  I think that it just blind sides me sometimes.  I stopped eating, stopped showering, stopped cooking, cleaning, etc.  I didn’t even watch T.V.  All I could bring myself to do was to go outside into these gorgeous mountains that I get to live in, and alternate between sitting up and lying down.

Shane was out of town that week.  And thank God I had to get the kids to school each day, pick them up after school, find dinner each night, and keep Cale from beating everyone up, or I probably wouldn’t have moved at all.  I just couldn’t stop thinking, “It’s really going to happen.  God’s just preparing me.  That’s what’s going on.”

Luckily, I had a place that people were expecting me to be on the night of day two.  And because I worry, just enough, about what people think of my ability to show up where I said I’d be when I said I’d be there, I managed to pull myself out of the self-pity tar pit, take a shower, and go.  And, afterward, a friend of ours came out to the house to check in with me.

There are pluses and minuses to having friends that know you really well.  The pluses, of course, are that they know you really well.  The minuses, however, are that they know you really well.  “So what’s going on with you?” my friend asked.

I don’t ordinarily tell anyone when I can’t get out from under the big, mean dog because I’m ashamed to have been feeding it in the first place.  I don’t want to be that kind of person anymore.  I want to be a helpful person – someone that people feel they can come to for support, not a gaping black hole that people have to walk a wide circle around in order to avoid getting sucked in.  So I honestly don’t know why I answered, “I’ve pretty much been sitting in the same spot since Shane left.  I’m afraid that I’ve shut down.”

We sat in silence for a moment while he contemplated whether or not to run screaming in the other direction.

“You know,” he finally said, trying hard to hide what appeared to be the slightest hint of underlying frustration, “We’re not always good at guessing how to help you guys.  That’s why I texted Shane when he left and asked what we could do while he’s gone.  We could bring meals.  We could watch kids.  We could do whatever, but we have to be told what because we don’t just know.”

I do think about that sometimes.  I mean, there are all these people here that offer help.  But my kids don’t eat regular food, and I’d hate for someone to take the time to cook a meal just to have my weird kids refuse it.  And there’s no point in having someone babysit when all I’ll probably do, without my kids, is lie there and stare at the mountains.     

I’m losing my child.  Do you understand that?  I’m losing him very slowly, and there isn’t anything in the world that anyone’s ever going to be able to do, or say, that’s going to help me with that.  All I can really do, when it actually overtakes me, is quite feeding the mean dog and then wait for it to shrink back down to size again.  It’s an inside deal.

I tried to explain this to my friend.  I talked about how I needed to not feed the mean dog in the first place.  I talked about how I needed to be feeding the other dog, the nice dog, with positive thoughts instead (and somehow my friend managed to NOT roll his eyes as he listened).  I talked about how I needed to be helping others and living in the moment and all that jazz.  And it all sounded pretty good, but it somehow didn’t hold any actual water since I was still in the same spot I’d been since Shane had left.  My friend then patiently suggested something.

“I don’t know, maybe we just come over here,” he said, “And maybe nothing gets done.  Maybe we just be here.”

Huh.  

You know, I guess I had always thought of the word “help” as an action word.  More importantly, I’d always thought of it as a “taking” word.  You take something from someone – someone’s time, for example, to get something done that you need done.  But I’ve always thought that if you don’t actually need anything done, then you probably shouldn’t be “taking” time away from others.

I had never really thought of it in the way that my friend was talking about it here – to just let somebody be with you.  Not to cook, not to babysit, not to “do” anything in particular, and certainly not to attempt to fix your problems, but to just to be.  It somehow reminded me of the meditation that that woman that I admire so much suggested.  “Go to the place that hurts and stay there.  Don’t try to fix or change it.  Just be there.”  People don’t need to understand a damn thing about how you’re feeling, or about anything for that matter, in order to be able to do that.

I suddenly realized how limited my ideas about “help” are.  I also saw what a destructive thing it is to think that others need to understand what you’re going through in order to be able to help you.    

This made me think of the woman in the back row with the tears in her eyes again, which snapped me right out of it.  I mean, I could actually hear the sound.  One of my favorite people likes to say, “That’s the sound of your own head POPPING RIGHT OUT OF YOUR ASS.”

This woman wasn’t crying during my talk because I was helping her.  I certainly wasn’t.  And she wasn’t crying because she was getting something done that she needed done, or because all of her problems were suddenly being solved.  She was crying because for one, brief moment, she wasn’t alone.  And God, that’s a really big deal, isn’t it?  I could suddenly see the God in it again.  

I’m reminded of that terrible old county song that I can’t remember the name of.  And it’s probably not terrible.  I just have a strange aversion to country music, that’s all.  But lyrics say something about a little boy that watches his parents fight violently in the midst of alcoholism.  And one night, one of the parents actually kills the other, if I remember right. 

The little boy is watching this from behind the couch, or from behind the door of the closet, or somewhere.  But, sitting right beside him, is an angel.  Or Jesus.  Or something, I can’t remember what form God takes in the song.  But he was sitting right beside the little boy, and the little boy could actually see him.

God doesn’t keep life from happening.  I often wonder why this is and I often ask him why.  And the answer that I continually get has something to do with people having free will, something to do with allowing people the dignity to experience their own lives.  And while bad things do seem to come out of this sometimes, there are many good things that happen as well.  I mean, you can see God (or, if you prefer, good) in everything, every single day, if you just stop and look for it.

I went to Starbucks with a friend of mine once, after I’d been trapped in my house for months because I couldn’t even take Cale to a grocery store because of his behaviors, and I said, “God, it’s so beautiful in here! (in a Starbucks for crying out loud - how pathetic is that?).  Why do you suppose that God likes to keep me trapped like a prisoner in my own home?”

“Oh, no,” she said, “God’s not the reason you’re trapped like a prisoner.  God’s the reason that you’re at Starbucks today.”

It’s such a simple shift in thinking that I’ve never forgotten it.  It's all about what it is that I want to experience, or, rather, how I want to experience life happening.

I’ve been practicing this again lately.  When I look at my son, I have this tendency to only see what he’s doing that’s not normal because I get so worried about his future.  So I’ve been making a conscious effort to see all the wonderful things, the things that are exclusively Cale being who he is (the matching pajamas and the rubber boots, and the smiling and the trying to be a good boy in his own little ways), right now.  God is in the right now, all the time.  My son’s never going to be alone.  And he’s never going to be unloved.   

I can’t pretend that my kids’ problems don’t bother me, and I’ll always have to continually forgive God, continually forgive the world that we live in, continually forgive the way things are, in order to be able to keep going.  And even though I occasionally forget and try to do it alone, I’ve never, not even once in my whole entire life, had to do it alone.    

Speaking of that, I’ve got about a hundred pages of unseen material that I’m hoping will be a book someday.  And I’m adding to it on a daily basis.  It’s coming along slowly but surely.

My dream for this story of mine, the whole point of it really, is that others might read it and feel like they’re not alone.  I mean, there have got to be literally millions of people out there who were raised with a sibling with Autism, who then turned around and had children of their own with Autism… 

Hmm.

Okay.  Maybe there will be one other person out there who will read my story and feel like they’re not alone, while everyone else is busy snoring.  Yup, that’s probably more realistic.  And that would totally make it worth it.

Thanks friend.