Independence Day, Part 2 of 2

It was one of those clear, perfect evenings that follows a very hot day.  And even though there was no creek nearby, there were tall, pine tree covered mountains completely surrounding our little RV park.  The forests outside of our immediate clearing were thick and woody too, the kind that you can barely see through, with bright green, moss covered trees.  It reminded me of the Oregon coast.

My kids were sitting next to me in lawn chairs, right in the midst of all this gorgeousness, under the most breath-taking colors of a mid-summer sunset, playing video games. 

Sigh.

And Cale was behind the trailer obsessing over the water from the hose, with the neighbors right there watching him from their color coordinated lawn chairs, wondering what was wrong with him.

“He’s Autistic,” Shane explained to them at one point.

“Yes,” the lady smiled at Shane, “I gathered that.”

We’d been to town already and had spent $30 on five, tiny soft-serve huckleberry shakes.  And unable to imagine what an actual meal would cost, we’d decided to do something my way.  We’d cooked hot dogs over a fire for dinner, with s'mores for desert.

No one else cooked over an outside fire there.  In fact, we could actually smell the grilling of steaks and peppers and potatoes, that was happening inside of the motor homes.  It was just odd.  The owners of the camp ground had to bring us a portable fire pit to use, in fact, because the “camp” site itself didn’t actually have one. 

Sigh.

I don’t mind being a spectacle.  I’ve been one of those for most of my life, so it really doesn’t bother me all that much.  What I can’t stand, however, is missing things.  Missing life. 

I’m the one that’s always there.  Or, I used to be anyway.  I’m the one that’s always at the party, or the wedding, or the event, or the birthday, or at any other kind of celebration for that matter.  So I was hit with quite the little wave of self-pity when I didn’t get to be there as Alden and Isabel watched their first Fourth of July fireworks display.

Shane and my mom took Alden and Isabel into town to watch the fireworks, and I stayed behind with Cale.  It was for the best really.  Things were already so unfamiliar for Cale that my mom putting him to bed probably would’ve sent him over the edge.  I snuggled him up at his bed time, sang him his song, and closed the curtains to his bed.  Then I went outside the trailer, sat down, and stared at what was left of the fire.  

It was getting dark outside.  I could hear the booms from the fireworks going off in town, and I felt alone.

“This isn’t how it was supposed to be,” my brain started in on me almost immediately, “I was supposed to be able to be with my kids for these kinds of things.  Nothing, in fact, is how it was supposed to be.  We were supposed to go camping for crying out loud.  CAMPING.  This isn’t camping.  Where are the nearby pine trees?  Where’s the rush of a passing by creek?  The very most basic BASICS are missing here.  I mean, what kind of a camp site doesn’t even have a fire pit?”

I sat there for quite awhile, staring at the dark mountains and listening to the fireworks that I couldn’t see.  And when I couldn’t take it anymore, I went inside to make a cup of tea in the microwave that wasn’t supposed to be there.  As I was doing so, I saw my son’s wide eyes peeking out from between the curtains in front of his bed.  The increasingly more frequent sounds of the distant fireworks were starting to scare him.

“It’s okay baby, Mama’s right here,” I said as I got into bed with him.  He eased right up and smiled when I started singing his song again.  Then he put both of his little arms around me and squeezed, and I didn’t feel alone anymore.

A friend of mine once told me that God doesn’t make deals.  “You get what you get and you don’t throw a fit,” to put it into pre-school language, and you can feel however you’re going to feel about it until you’re done feeling that way about it.  Then you change how you feel about it if you care to. 

I was so angry about my son’s Autism for so long.  And I’d like to clarify here that it’s had nothing to do with my son as a person.  It’s had to do with the profound, inflexible, unfix-able, unchangeable disability that comes along with him, and the fact that it often keeps us from living the lives we thought we were going to live.  I still, on occasion, have moments of anger about this, especially when missing first time events of my other children’s lives. 

I adore my son.  I don’t talk about his good qualities nearly enough – like the fact that celebrations mean nothing to him at all.  He doesn’t notice when it’s someone’s birthday, or when it’s Halloween or Christmas or Mother’s day or Father’s Day.  To him, every day is a celebration.

And he doesn’t acknowledge or care about gifts.  He doesn’t acknowledge or care about stuff of any kind for that matter.  He doesn’t compare peeling pop ups to shiny new motor homes, or consider what might be the right or wrong way to camp.  To him, all of it is special and none of it is special.  And it doesn’t occur to him in the slightest to worry about what others might think of him.  He’s so cool that way.

The Autism isn’t something that I can change or avoid.  And I had to be angry about it for as long as I had to be angry about it.  Eventually, however, I got sick of feeling angry.  That’s when feeling peace instead of anger became paramount to all else. 

Only then could I let go of the “how it was supposed to be’s.”  Only then could I stop having to be “right” about things - the idea that a mother should be there the first time her children see Fourth of July fireworks, for example.  How do I know what a mother should or shouldn’t be there for?  I mean, it’s not like Alden and Isabel really notice.  They’ve never known things to be any other way, so they don’t even know that something’s wrong.  I’m the only one who notices that.  And how long do I want to do that for?

Someone that loves my children is always there for them, and always has been.  It just hasn’t always been their mom.  It’s been the exact right someone that was supposed to be there for them instead.  I’m not the end all be all for my kids.   

It’s only when I let go of my old ideas - stop thinking I’m right about how things are supposed to be - that I become open to new experiences (like RV-ing), and open to the idea that the Autism itself is an incredibly special gift.  It’s a pain in the ass, don’t get me wrong.  But it’s also a gift, because Cale’s Autism has taught me more about the things that really matter than anything else ever has.  It’s such a privilege to have him in my life.  

As I sat there holding Cale, I remembered that my friend also said that the plan for me was set in place even before God made the rivers.  That’s a long time, don’t you think?  And it got me thinking, maybe we get to live a bunch of lifetimes. 

I have to believe that there’s enough time for everyone and everything.  I mean, I’ve been camping, by my own definition of it, a lot already, thanks to my gutsy, glorious parents who always insisted on living life to the fullest with whatever they had.  Maybe I get to just enjoy RV-ing now.  I must confess that it’s quite nice to have a microwave in the middle of the mountains. 

And maybe I’ll get to see Alden and Isabel watch Fourth of July fireworks for the first time in another life.  Maybe this life just happens to be the one in which I get to pay attention to Cale.    

I sat there awhile and thought about all the people I’d like to spend a lifetime paying attention to.  There are a few of them.  There are some that I would even trap and snuggle for a lifetime if I could get away with it.  My husband, for example.  I’d really like to just trap him somewhere and do nothing but hold him in my arms for an entire lifetime. 

Maybe Cale was one of these people in a past life.  Or maybe I was one of the people he wanted to trap and snuggle.  I mean, I was definitely feeling trapped and snuggled.  Maybe it’s simply our turn now, in this lifetime, to hold each other.  It’s all so much bigger than we can see. 

As I pondered these probably silly ideas, Cale fell asleep in my arms.  I looked down at his sweet little sleeping face and I suddenly felt, with my whole being, that everything was exactly how it was supposed to be.  I was trapped, most definitely.  But I was also free in a way that I had never been before.

Alden and Isabel and Shane and my mom told me all about the notorious fireworks display when they got back, and, as they did so, I couldn’t feel even one last drop of self-pity.

“It was SO GREAT Mom!” Alden and Isabel shouted.

“It really WAS soooo much fun!” Shane explained, “I’ve never seen anything like it before!”

My mom laughed out loud and asked Shane, “What would you say that it resembled?”

“Oh, I don’t know,” Shane replied, “A Civil War battle field maybe.  It was absolutely nuts!”

“People were setting off giant rockets all around us,” my mom explained with a big smile on her face, “which was fine when they shot straight up like they were supposed to.  It was when they fell over and THEN launched that it set people running!  I thought about coming up here to watch Cale so that you could run down and see it for yourself, but then I realized that you would’ve made Shane and the kids leave.”

“Yeah,” Shane smiled, “It’s SUCH a good thing Jess wasn’t there.  She wouldn’t have let us stay for more than about two minutes.”

They were right too.  I wouldn’t have.  It really did go exactly the way it was supposed to.  It was the perfect end to a perfect day, in spite of me.

The next morning, after Cale had obsessed over the water in the hose behind the trailer until he was literally bursting at the seams for a bigger pool, with the neighbors right there watching him from their color coordinated lawn chairs, he started screaming.  And after he’d screamed uncontrollably for about an hour or so, attracting the attention of every single person in the entire campground, yet it was still going to be another hour before the swimming pool opened, we decided to pack it up and go home.

Alden and Isabel were sorely disappointed.  “But the little girl in that trailer gets to stay here for four days, Mom!” they explained.

I put Cale in his car seat in the Land Cruiser with the air conditioning running and shut the door.  That way we didn’t have to listen to the screaming while we packed up.  We managed to get the trailer squished back down again fairly quickly.  Then my mom and I, at the beckoning of Shane, tried to push the thing towards the Land Cruiser so that Shane could hook it back up. 

It wouldn’t budge.  And I’m no wimp.  I can hold up my end of any couch, dresser, wardrobe, anything, just as well as any guy.  Having to deal continuously with an almost seven year old, never-ending toddler has provided me with an almost unnatural amount of upper-body strength.

Turns out there were boards in front of and behind the wheels to keep the trailer from rolling away.  Super Man couldn’t have moved the thing.  No one blamed anyone for forgetting that the boards were there though, because no one could be wrong.  It’s amazing how much relationship erosion that one, little tool can prevent.

Shane got into the truck and pulled forward, then got out to see how close he was, then got in and backed up, then got out to see how close he was, then got in and pulled forward, then got out to see how close he was – each time shutting the door as he got out so that we didn’t have to hear Cale’s screaming.  It went, “aaAAAAUUUUGGG!!... silence… aaaAAAAHAAAUUUUGGG!!!... silence… AAAAUUUUGGG!!... silence… etc.”

If we weren’t a spectacle before then, we certainly were by that point. 

While my mom and I were pushing the trailer the last inch or two to get it into place, I looked up and saw our neighbors again.  They were less than fifteen feet away, as usual, on their color coordinated lawn chairs.  They were laid back with their heads resting in their hands behind their necks, smiling as they watched us.

“We’re the family you watch when you want to feel grateful for what you have,” I whispered to my mom, “They’re probably saying to each other, ‘Aren’t you glad we’re not them?  We’re sooo blessed, aren’t we?’”

We were all giggling with mixed emotions at own ridiculousness by the time we got on the road.  And once Cale had stopped screaming and things had calmed down a bit, we began to decompress.  “Wow,” Shane said to me, “We survived.”

“We camped and the kids saw fireworks,” I replied, “Mission accomplished.”

We sat in silence for a few minutes.

“Are we ever gonna do it again?” I asked Shane.

“Not without a proper set up, we’re not,” he said immediately, “We need a motor home.  I’ve decided.  There will be nothing to pop out or attach to a truck.  It needs to have space and air conditioning and a bathroom with a bath tub in it for Cale.”

I looked at him and blinked my eyes, “They put bath tubs in motor homes?”

“Oh, yeah,” he said, “and it’s the only way to go with our kids.”

 “You know,” I said, smiling as the surrender sunk all the way to the bottoms of my toes, “I’m with you on that.  I think I like your idea of camping.”

 

 

 

 

"Cured"

Have I mentioned that my daughter, Isabel, is cured?  Don’t ever say the word “cured” to an Autism parent by the way.  There’s a school of thought out there that completely shuts down with the very mention of that word, and will hear nothing else that you might ever have to say about anything again after that.  This is because no one is ever really “cured” of Autism, no matter how well one learns how to “blend in.”  But my daughter, it seems, has learned how to “blend in” just enough to be able to fool virtually anyone.

I had a healer tell me once that Isabel is healing herself – that Isabel actually has super powered, magical healing abilities, and that she is, in fact, healing her own body.  Okay, maybe this healer didn’t use those exact words.  But that was the general idea.  My inner skeptic sprang immediately forth, shot the idea out of the sky mid flight, and watched it hit the ground with a thud.  I’ve come to discover, however, that it doesn’t really matter all that much what my inner skeptic thinks.

It all started right before we moved, when our state caseworker asked me for new psychological testing documentation for Isabel.  I didn’t have any new documentation, however, because Isabel hadn’t been tested since she was four years old.  She’s eight now.

I could’ve asked the school district in my home town to do such testing, and it wouldn’t have cost me any money.  The only problem with this is that I can’t trust the school district in my home town any further than I can throw it.  I discovered this rather slowly over the year and a half that we lived in my home town again.  And this is due, primarily, to my past (which I’m currently rehashing the details of in my book, so it’s all rather fresh to me again now), not so much due to anything current.   

I discovered that this mistrust hadn’t gone away when my face split down the center, revealing a rather significantly sized inner demon, at the last IEP meeting that I attended there for one of my kids.  It happened at almost every IEP meeting that I attended there in fact, toward people who not only weren’t there when I was growing up with my brother, but who also didn’t deserve to be treated that way.  I couldn’t trust them.  And it had finally become clear to me that I was never going to be able to trust them, no matter what they ever did or didn’t do.  This is one of the reasons we moved to the other side of the state.

I decided to have an objective third party, and entirely outside of any school district entity, a thoroughly unattached, private neuropsychologist, do Isabel’s testing instead.  It was rather expensive, but I’m now so very glad I did it.  If the school district in my home town had come up with these particular results, I would’ve thought it to be a conspiracy for sure.  I would’ve thought it to be the district’s attempt to get out of doing anything more for Isabel, and I would’ve felt that we’d been screwed at the deepest possible level.

Isabel’s I.Q. has risen significantly since she was four years old.  Odd isn’t it?  I mean, as far as I know, there’s a particular set of tests used to determine I.Q.  And this set of tests is specifically designed to bring consistent results, no matter what a person’s disabilities are, and no matter how many years go by in between testing.  I.Q. scores aren’t supposed to change significantly.  Ever.  It’s like getting gray eyes and hair that’s straighter than a horse’s tail – it’s what you’ve got to work with.  That’s what I’d always been taught anyway.

My daughter’s I.Q., at four years old, was around 70 across the board.  That’s significantly below average.  Now, however, at eight years old, it’s over 100 across the board.  Her overall I.Q. score is 110.  That’s well within average range.  And not only that, but she’s functioning on grade level in every area of her little life.   

My inner skeptic began SCREAMING immediately, “WHY in the HELL has this happened?!  I mean, how could they tell me that my daughter has a lifelong, permanently disabling condition, and then later simply change their minds?  Someone must have screwed up.  Either the first neuropsychologist screwed up (forgot to factor the Autism into the testing, for example, and has put me through HELL as a result), or the last neuropsychologist screwed up (how would it be possible, though, to accidentally get too high of I.Q. scores?).  Who was it that f#*ked up?!!”

The more subtle, yet vastly more disturbing question that’s been rolling around in my head ever since I got the test results back, however, has to do with what all of this means for my son, Cale.  I mean, are they simply going to change their minds about him someday too?  I have hoped so for a very long time now, but, you see, this is where I always get into trouble.

I have one child, Isabel, that I’ve watched get better and better over the years (everything I touch turns to gold for her), yet I have another, Cale, that hasn’t changed significantly in any way (no matter what I’ve done for him) since he was about eighteen months old (he’s almost seven now).  And this has just killed me.  I mean, it’s made absolutely no sense to me at all because they’d both been given the exact same diagnosis.

Hoping that Cale will get better has come to mean living in a constant state of conscious awareness of the fact that he’s not getting better.  It means worrying all the time.  It means torturing myself continually with the idea that I’m not doing enough, and torturing everyone else (the insurance company, the state, the doctors, the therapists, the schools, etc.) with the idea that they’re not doing enough either.  It means hating God and hating life and hating everything and everyone around me.  It means slamming my head repeatedly against a brick wall, moment after moment, hour after hour, day after day after day.  It also means dumping all of my family’s time, energy, and money into an endless black hole.

I’ve decided that it’s better, for me anyway, to have no hope at all that Cale will get better, but to instead accept that Cale is already exactly as he should be.  And it’s more fun, I’ve discovered, to live in the decision that all is already as it should be.  Then maybe I’ll be pleasantly surprised if Cale ever does get better, instead of becoming suicidal in the process of watching him not.

Have you ever noticed that my inner skeptic is just a little bit of a bitch?  I’m never happy when I’m listening to her, and I really want to be happy for my daughter about all of this.  I’ve decided, therefore, to do just that.  I’m not listening to my inner skeptic on this one.  I’m jumping for joy for Isabel instead.  The state, as a result of her new I.Q. scores, cut all of Isabel’s services immediately.  I no longer have to take her to therapy twenty thousand times per week!  I’m down to only one kid, Cale, that I have to take to therapy twenty thousand times per week!  WHA - WHOOO!!

We had an IEP meeting for Isabel at the new school here a couple of weeks ago.  And they, too, are impressed with Isabel’s progress.  Well, I shouldn’t say “impressed” exactly.  They couldn’t even figure out how it is that they’ve been dealing with the same child as the one that’s on the paperwork from the school district in my home town.

 “We’re not sure what to do here,” the new school’s speech therapist started off, “A year ago, you requested several therapy evaluations from Isabel’s last school.  All the paperwork was signed to have the school do these evaluations too, yet it appears that they were never done.”

 I smiled.

“Then,” she continued, “right before you moved here, you requested the results of these evaluations so that you could give them to us.  Only one evaluation was apparently done, however, at that point.  In fact, the date on the report itself is the exact same date that you actually made the request.  And I’m not talking about your first request.  I’m talking about your last one, the one that you made right before you moved here.”

 “Uh, huh,” I answered, trying hard not to actually laugh.

“The school districts in this state are required to provide you with therapy evaluation results within sixty days of your request for them,” she went on, “but they apparently didn’t honor your first request at all, and only honored your second by doing one evaluation on the same day that you requested it.  The only problem with this is that I’m not sure how this particular evaluation could’ve been done in one day.  

“Hmm,” I answered.

“There’s got to be a mistake.  We need copies of the results of all of the evaluations that you requested, but the last school didn’t send them to us with the rest of Isabel’s paperwork.  Did they give them to you instead?” she asked.

I was going to have to spell it out for them, and without badmouthing Isabel’s last school somehow.  It was a serious challenge, but I could be diplomatic.

“You have all the paperwork that I have,” I answered, “I’ve asked for the evaluation results repeatedly, but I, too, have only received the results of one evaluation.  I’ve gone the entire school year not knowing how my daughter is really doing, and I think it’s safe to assume that this is because the rest of the evaluations were never done.”

Everyone shuffled uncomfortably in their chairs.  I, however, inflated with gratitude for the fact that they actually seemed to care.

“I’m sorry if this messes up your own reporting to the state,” I continued, “but I lost the energy, some time ago, for fighting every little thing.  All we have to go on, therefore, are the results of this one evaluation, which, as you’ve already said, wasn’t done until right before we moved.  I should also point out, however, that all of the observations in this report were made the previous school year.”

They all looked at me at the same time.  I was going to have to spell it out precisely.

“There is no current observational data in this report,” I said, tapping my finger nail lightly on the papers in question, “They slapped a new date on old information.  That’s how they were able to get it done on the same day that I requested it.  So what the last school district has actually given us to go on, regarding Isabel’s progress in her school therapy for this year, is nothing.”

Silence.

It was delightful to see, right on their faces, the way that I felt about this.  And dropping the ball regarding these evaluations isn’t small beans compared to what the school district in my home town is actually capable of.  At the end of my brother’s eighth grade year at one of the middle schools in that district, after he’d been tortured for two straight years by a group of other students, and eventually beat up at school during a school day, his middle school adopted a new policy which read, “We will no longer be responsible for the safety of our special education students.”

I’m not kidding.  I bet my parents still have it in writing should I ever need to prove it.  So Isabel’s evaluations not getting done are like… practically non-existent beans.  I smiled politely and asked Isabel’s new IEP team, “Have I told you how grateful we are to be here, and how grateful we are for all of you?”

This eased everyone up a bit and created immediate smiles.  We scheduled new therapy evaluations for Isabel.  Then we compared the observational data from Isabel’s year in first grade (she’s almost done with second grade now) to the current information in the private neuropsychologist’s report.  And the IEP team commented repeatedly, throughout the process, on how difficult it is to believe that Isabel is the same child as the one that’s in those old observations.   

It still hadn’t occurred to me, at that point, to consider my daughter “cured.”  In fact, the word didn’t actually occur to me at all until I took Isabel to the new psychiatrist here a couple of days ago.  After reading the neuropsychologist’s report for himself, and after doing his own evaluation of Isabel, the new psychiatrist looked at me and said, “I’m going to change Isabel’s diagnosis if you don’t mind.”

“Excuse me?” I actually startled.

“Well,” he said rather off-handedly, “An Autism 299 diagnosis is traditionally reserved for a condition that doesn’t get better…”

At that moment, I watched the realization that I’m Cale’s mom too hit him in the head like a rock.

He’d just seen Cale a couple of weeks before, and we’d had a conversation about “Classic Autism.”  But you know how doctors are.  They’re so heady and wordy in their ability to say things without actually saying them, because they all have to be so damned careful about everything anymore.  Or maybe I’m just delusional about the things that I hear about my kids.  I don’t know.  But I do know that he’d never actually said that Cale wouldn’t get better.  Not in those words.  No doctor had ever said that.  How could they?

“Cale’s condition is never going to get significantly better,” he said.

Silence.

And there it was.  He said it so directly, using Cale’s actual name and looking me in the eyes as he did so.  But he also said it more sensitively that time, like he’d just taken a peek inside of my brain at the massive, unfinished, Isabel/Cale jig saw puzzle, and realized that I was missing this significant piece.  He’d just realized that I didn’t actually know that yet.  And of course I didn’t know it.  Not for sure.  Isabel and Cale have always had the same diagnosis. 

It seems like Isabel has defied everything ever known about Autism.  It seems like nothing short of a real, live miracle to me that she’s gotten so much better over the years, and so of course I’ve expected Cale to defy the limits of Autism too.  Of course I’ve expected the same miracle for him.  I’ve always hoped for it at the very least, and this hope has tortured me in ways that I can’t even really explain to you.  I can’t tell you how great it was to finally be given the permission, by a doctor, to just let it all go.

I was so stunned by the information itself, at that moment, that I couldn’t say anything at all, but I’m going to have to remember to thank this man the next time we go in to see him.

“Isabel’s condition, on the other hand,” he finally continued once he felt it was safe to do so, “has gotten better and better.  Therefore, I don’t think an Autism diagnosis is appropriate for her.”

It was just such a strange experience.  I mean, at the exact same moment my daughter was let out of the cage, the door slammed shut on my son.  I could actually feel the freedom, however, that comes from living in the decision that all is already as it should be.  It didn’t even occur to me, that day, to be angry with God, or angry with life, or angry with anybody or anything.  I didn’t even consider going home and going to bed for the rest of my life.  All I could think about, in fact, after that appointment, was ice cream.  What?  Ice cream fixes everything, no?

I took Isabel to Baskin Robins after we left the psychiatrist.  We ordered heaping, fats bowls of three different kinds of ice cream, each dripping with piping hot fudge, and each topped with an ice cream cone, like a pointy little hat, as more of formality than anything else.  I thought I could actually hear my inner skeptic rolling over in her grave as Isabel and I ate and talked and laughed and celebrated, with our whole hearts, the fact that Isabel doesn’t have Autism anymore.  It was awesome.   

My oldest son, Alden, has been riding his bike to school lately, so I’ve been driving Isabel over in the mornings without him.  And just this morning, as we pulled up to the school, there was only one place in which I could drop Isabel off.  She was going to have to cross the parking lot, all by herself, in order to get to the place where she meets her class, so I said, “Watch the cars in the parking lot Sweetie,” as she was getting out of the car. 

Isabel looked at me, for just a moment, before she shut the car door.  I tried not to think anything of it.  Then she walked over to the edge of the parking lot, stopped, and proceeded to simply stand there.

I waited almost a full minute, watching Isabel through the rear view mirror and actively holding my inner skeptic’s coffin door shut, before I began to investigate what Isabel was doing.  I finally turned around and looked out the car window.  There weren’t any cars obstructing Isabel’s path, nor were there any cars coming.  Yet she was still just standing there.

By this point, my inner skeptic was banging loudly on the other side of her coffin door, so I went ahead and let her out.  I’m afraid that I still need her in times like these. 

Have you guessed what Isabel was doing yet?  She was watching the cars.  The parked cars.  She was standing there sincerely, watching the cars, just like I’d told her to do.

I rolled the car window down and cleared my throat.  Then I said, “Um, Isabel.”

“Yes, Mom,” she answered.

“You'd better get your super powered, magical healing abilities wand out,” I said, “because it looks like you missed a spot.”

“What?” she asked.

 

“GO MEET YOUR CLASS!” I exclaimed.

“Oh okay,” she said, and she ran off to meet her class.

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.