Independence Day, Part 1 of 2

“God doesn’t make deals.  The plan for you was set in place even before God made the rivers.”

John S.

I went camping all the time when I was a kid.  Only camping, to me, was to put up a tent in the mountains, set out a couple of lawn chairs, hang a hammock between two pine trees, and cook meals over a fire.  We always made sure we were right in the trees so that we had shade, and we always made sure we were right by a creek so that we could get water to boil for cooking, for washing our dishes, and for brushing our teeth by moonlight at bed time. 

On occasion, we needed additional shade.  That’s when we hung tarps.  My dad was a big tarp guy.  There were times when we had tarps hanging everywhere.  You could’ve put an entire family home under one of my dad’s multi-colored tarp jobs in fact.  And if we had to wash clothes in the creek, we hung them on clothes lines made of twine afterwards.

I never considered what any of this looked like when I was little.  I mean, somehow the words “Beverly Hill Billies” never even entered my mind.  We camped that way all the time.  And it wasn’t until I was seven or eight years old that we discovered the luxury of RV-ing.  That’s when my parents purchased our sometimes working Volkswagen camper bus.

My parents were a couple of remnants of the late 1960’s hippy movement.  They met in Missoula in college, which should say enough.  But they also both had long, dark hair - my dad’s slightly shorter than my mom’s.  The closet they shared was filled to the brim with flowers and scandals and bell bottomed jeans.  And they both had special places in their hearts for macramé, Fleetwood Mac, and long, orange sky evenings spent playing acoustic guitars on the edge of some mountain river.

My parents once actually chose green shag carpeting for our living room because it reminded my mom of the ocean floor.  So, yes.  Whether or not they smoked little dope in college was always one of those tiny questions in the air.  

The only thing that set my parents apart from your average, peace loving hippies was the fact that they both loved to hunt.  We lived in Montana, after all, and everyone who was anyone hunted.  So every fall season we’d make a family fun day out of murdering deer. 

Even my mom, with her flowing cotton blouses and otherwise gentle nature, could look Bambi’s mother straight in the eyes just before blowing her brains out the side of her head.  And at the end of our family fun day, we’d throw the furry, bleeding remains over the top of our peace loving Volkswagen camper bus and drive them home.       

In addition to the Volkswagen camper bus, we also had a Volkswagen bug.  In fact, for every single minute of my childhood we had a Volkswagen bug.  It wasn’t always the same bug though.  The moment one bug would die, another just as old, just as rusty, and just as crappy looking bug would magically appear in our driveway.  Sometimes the Volkwagens ran.  And sometimes they didn’t.  But they were always, always there. 

We thought we’d died and gone to Heaven when we started camping in that bus.  It’s not that it had a toilet, or that the sink, stove, or refrigerator worked, or that it had air conditioning or anything like that.  And it’s not that it didn’t break down a lot.  My dad compared fixing the thing to fixing a lawn mower. 

Whenever we broke down on the side of some dark, mountain road, my dad would simply crawl underneath that bus, dragging himself through the mud in the process, and whack it with something heavy.  Then it would start right back up again.  It was only occasionally more complicated than that. 

It was heavenly because the radio usually worked.  We could listen to the Rolling Stones as we were driving down the road.  It was also heavenly because we didn’t have to put up tents to sleep in anymore whenever we went camping.  We still camped in the trees, hanging hammocks, tarps, and clothes lines.  And we still camped by a creek so we could boil water and cook outside.  Our bus was simply our very own, sometimes movable red tin tent. 

My husband, Shane, has an entirely different experience with RV-ing than I do.  It’s quite fascinating to me, in fact, how two people can have such polar opposite experiences of the exact same thing.  Shane’s family RV-ed in KOA’s when he was little.  In motor homes.  Fully functioning motor homes I might add.  I did that once with my grandparents when I was a teenager.  There was a manicured lawn, a swimming pool, and a game room.  It didn’t feel like camping at all.

Shane and I discovered these differences quite recently, after his dad gave us a pop up trailer to use for camping.  And really, Shane and I knew about these differences already, because we’d talked about them before.  But they somehow sunk in more deeply when we decided to take our kids camping, for the first time ever, over this past Fourth of July weekend.

I shouldn’t say that it was our first time actually.  We took our kids tent camping once, for one short night, with some friends of ours in Arizona a couple years back.  This didn’t really count as camping, though, because our friends, God bless them, did all the work for us.  They put up our tent, made our beds, cooked and fed us, etc.  All we had to do was deal with Cale.  We chased him around the woods all day and then listened to him cry all night.  And oh, was that a long night.  We hadn’t gone since. 

It’s difficult for a child with non-verbal Autism, whose only hope for a good day is the maintenance of a familiar and predictable daily routine, to do unusual things.  But every now and then, Shane and I decide that the life of our family can’t revolve around Cale alone.

Alden and Isabel had never seen a Fourth of July fireworks display before this year.  Alden’s ten years old now, and Isabel’s eight, yet they’d never seen one because we can’t take Cale to a fireworks display.  Not only would Cale not “get it,” but the noise alone would send him into a tailspin I’m not sure he could recover from.  And it’s difficult to find someone to watch Cale on the Fourth of July because most people are busy celebrating with their own families.  So every year, on the Fourth of July, we put all three of our kids to bed at their regular time and pretend that it’s not a holiday.

This year we decided to take the trailer and go camping, for whatever it meant for Cale.  Shane got online immediately and found a campground near a town that puts on an apparently notorious fireworks display each year.  He made a reservation for us to camp there.  That really should’ve been my first clue.

On the morning we were scheduled to leave (the morning of the Fourth itself), Shane and I got into a nasty fight over who was supposed to take out the garbage.  Yes, over the garbage.  It was undoubtedly the stupidest fight we’d ever had in the entire history of our relationship so far, yet it still took us a little while to realize that it happened because we were both terrified about the upcoming camping trip.  Our fear had come out sideways. 

We sat down together and decided that, first and foremost, we love each other.  It didn’t matter who was right or wrong about the garbage, and it couldn’t matter who was right or wrong about anything else over the course of the upcoming camping trip.  We simply don’t have the luxury of dividing over such things.  And besides, have you ever noticed how little, if at all, it actually matters who’s right or wrong?  Ever I mean.  Having to be right has the power to do so much damage, yet it’s the very thing that couldn’t possibly matter less. 

We started our day over again.  We said a quick prayer together (Oh GOD, PLEASE help us through this camping trip).  Then we finished packing up the pop up trailer, the kids, and my mom (who thankfully decided to come along at the last minute), and headed out of town to participate in the world’s most unpredictable experiment – camping with Cale.

I’m actually really glad, in looking back on it now, that Shane and I got into that fight over the garbage, and that we were able to start over again in that way.  It set the tone for the whole camping trip.

We pulled into a campground that had a manicured lawn.  There was a swimming pool.  And there were tiny patches of grass, with picnic tables on them, between lined rows of graveled, RV parking spaces.  Our patch had one, sad tree on it, that was to be our only shade.  And I couldn’t hear even the faintest sound of a rushing creek.

I had just assumed that my children would get a taste of what I got to experience while camping as a kid.  It’s not that I’d communicated that in any way.  I’d apparently assumed that my husband could magically read my mind instead.  For some reason, however, he hadn’t.  Perhaps it had something to do with the fact that he’s not telepathic.  And he couldn’t be wrong.  I had already agreed.  He was just trying to take his family to a comfortable place.  We were right across the road from a playground and the pool.

Shane unhooked the trailer from the Land Cruiser (necessary for popping up both sides of the trailer) and then wrestled with it for the next fifteen minutes in the hundred degree heat.  I helped him where I could, but mostly ended up just dealing with the kids and helping my mom set lawn chairs into the blazing sun.

“I miss Dad and his tarps,” I said to my mom as we sat down.

“I know,” said my mom, who’s nothing short of an expert in making the best of things when she wants to be, “but if you spray yourself down with a fine midst of water, then any little breeze will cool you right down.”

I stared at her.

“I know,” she laughed, “I call it red-neck air-conditioning.”

“Whew!” Shane finally said as he finished getting the trailer set up, fwapping his hands together after a job well done, “THAT was a pain in the ass.”

My mom and I took bags of groceries inside the trailer and admired the working refrigerator, the working microwave, the big beds, etc.  “This is so great!” I said, “It’s just so great!”

“I know!” my mom said, “and I thought we’d died and gone to Heaven when we got that old Volkswagen camper bus.”

Shane popped his head in the door and said, “Let’s go swimming!”

We got the kids into their swim suits and went to the swimming pool.  In the mountains.  While camping.  It was just plain odd.  There were steps down into the water at the corner of the pool, however, where Cale could sit with his two cups and pour water with nobody bothering him.  He smiled all afternoon long.  Alden and Isabel splashed and swam and let me know that they were having “the best time ever” too.  And Shane, at one point, stretched out in the sun on a reclining chair by the side of the pool and said, “Aaaaw.  Now THIS is what I remember from when I was a kid.”

Sigh. 

Shane couldn’t be wrong though.  I had already agreed.  Plus, I had to confess that we were all having an absolutely perfect time.

As we walked back to our “camp” after swimming, Shane started talking about the other RV’s in the campground.  It became clear to me, at that point, that he didn’t think much of our little trailer.  “What’s wrong with our trailer?” I asked him.

“Well,” he answered, “Look at it.”

I hadn’t noticed it before this, but I looked up at our trailer as we were walking towards it, and there it sat, complete with peeling paint and faded canvas pop outs, right between a full sized sparkling motor home and a brand new, perfectly shiny, fifth wheel trailer that was just as big, if not bigger, than the motor home on the other side. 

The entire campground, in fact, was filled with these kinds of units, complete with flip up awnings and matching reclining lawn chairs.  We were the only ones in a tiny, peeling pop up with mismatched lawn chairs huddled under one, small tree.  People were actually staring at our little set up as they walked by, with looks on their faces not unlike the ones that saw deer blood dripping down the sides of our peace-mobile years ago.

“It’s not big enough for us, for one,” Shane continued, “and it takes too long to set up.  I want to be able to pull up, park, and take you guys swimming.”

Shane couldn’t be wrong.  I had already agreed.  So I didn’t explain that it only took him fifteen minutes to set up, that it was a four star honeymoon suite compared to what I grew up camping in, and that there shouldn’t be a swimming pool in the mountains in the first place.

I forgot twine and clothes pins!” I fwapped myself in the head as we were trying to figure out what to do with our wet clothes later.

Shane looked at me patiently and smiled.  Even my mom looked up at me from her lawn chair, at that point, and said, “That’s okay sweetie, I’m sure our neighbors here will appreciate that actually.”

Shane explained the difference between backpack camping and RV-ing to me.  He was a cub scout for every minute of his childhood, and he still likes to hike in and backpack camp in far-away places on a fairly regular basis.  He’s just never considered doing so with Cale.  To him, RV-ing is the only way to “camp” with a child like Cale.  And even though we had a trailer that resembled a house, Cale still kept getting into the Land Cruiser and sitting in his car seat as if to say, “I’m ready to go home now.”

I had never really considered that there was a difference between backpack camping and RV-ing before, and I found the contrast between what was happening for my mom, who was used to camping, and what was happening for my husband, who was used to RV-ing, absolutely fascinating.  My mom kept saying things like, “Oh, this is so lovely, isn’t this just lovely?” and Shane kept saying things like, “Piece of shit, just work.”

The only real difference, from what I can tell, besides the obvious (“RV-ing” means you have a fully functioning house while you’re camping, and “camping” means you don’t) is the fact that you have neighbors less than fifteen feet away that you can either impress or horrify depending on your set up.  It was apparently obnoxious to “camp” in this RV park.

This did make things rather interesting.  I mean, we couldn’t quite do things the way that Shane knows how to do them, because of our trailer, yet we couldn’t quite do things the way that I know how to do them either.  Not without horrifying the neighbors anyway.  We couldn’t get our sink to work, for example. 

Shane ended up hooking a hose up to the water source in the gravel behind our trailer, right in front of what happened to be our neighbors’ patch of grass.  So every time I went behind the trailer to get water from our rigged up hose job, our neighbors were right there, watching me, from lawn chairs that color coordinated beautifully with their motor home that undoubtedly had a working sink in it.

I ended up hanging our wet clothes and towels from my Land Cruiser, like a hundred little flags waving in the wind.  But at least they weren’t on a clothes line.  That would’ve been tacky.

 

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.