Reindeer Food

Christmas is my favorite holiday!  Oh...did I say that about Thanksgiving?  Yeah, the people who know me best would be happy to tell you that I say that about every holiday.  The fact is that I really just love celebrating.  It doesn't really matter what we're celebrating.  It's simply my favorite thing to do.

Unfortunately, having kids has ruined many holidays.  That sounds terrible doesn't it?  But it's not.  It's really a matter of perspective.  The first time I heard my father-in-law talk about how he used to secretly hope that one of his kids would get picked off by a fast moving bus when they were little, I was horrified.  Now that I've had my children, I can put that into it's proper place and double over laughing so hard I just about pee my pants.  A much more mature response don't you think?

I shouldn't use the word "ruined" exactly.  Rather, my children have made the holidays "very loud with all the screaming."  Yeah.  That's more accurate.  And I usually find ways to enjoy anyways.  I'm not someone who's easily deterred from celebration.  I've come to realize that for me, suffering because of another's behavior is a matter of choice.  It's not always an easy choice and sometimes I still chose to suffer.  But other times I chose not to, no matter how much screaming is going on.  Still, I have always wished for a holiday when everyone could just be happy.  I've had kids for seven and a half years now.  Seven and a half years.  And before this Christmas, we had never had a holiday during which everyone was happy.

I used to wait for my children to "get" Christmas.  When I had my first baby, Alden, I couldn't wait for Christmas.  I don't know why I thought he would be as excited as I was.  He was only six months old.  He wasn't excited at all.  Instead he pooped in his Christmas outfit, tried to eat the Christmas decorations, and got fussy just in time for the opening of the presents.  I ended up alone in the bedroom nursing him to sleep while everyone else had fun.   Now he celebrates Christmas properly.  He gets so excited he screams like a little girl.

Isabel, who was two weeks old during her first Christmas, was dressed in red, fuzzy pajamas and passed from family member to family member getting snuggled.  She was sooo cute.  It wasn't bad by any means, but I couldn't wait for the day she'd recognize presents under the tree.  Now she recognizes them.  She has very little impulse control.  If she feels like doing something, she just does it right then and there.  She was opening the presents under the tree for three days before Christmas this year.  I had to keep wrapping them back up and telling her she had to wait.

And Cale...well...I've come to accept that Cale will probably never "get" Christmas.  He'll probably never recognize holidays as anything special at all.  I've also come to accept that that's not really so bad.  After all, he has been blessed with a mommy who can celebrate enough for the both of us.  With him I always just tend to hope that he won't scream the WHOLE time we were trying to celebrate.

Cale started a new medication about three weeks before Christmas.  And I'll have you know that I was never, EVER going to be a person who would allow psych. meds. anywhere near her children.  But, of course, that was before I had Cale.  I always told myself that if I had a child with problems, I'd help them with diet only thank you very much.  Now, I'm not discounting diet.  Diet changes alone have done wonders for Isabel, but diet alone hasn't done shit for Cale.  This is partly because we struggle so much to get nutritious food past his lips.

Anyways, do you know what I've come to realize?  That all my half ass attempts to understand the "human psyche" (a patched together bachelors degree in psychology before I found my real passion) have helped me to come to know just enough to be dangerous.  I've come to find out that I actually don't know everything.

Cale has become a completely different child.  It sounds so cliche, but the experience of it has actually been quite powerful.  He's become a calm, smiley, cuddly, present, interactive, and less rigid child.  He's saying a few words regularly and when he starts to cry, I give him a word for what he's trying to get.  And instead of ignoring me and immediately trying to climb onto to the top of the refrigerator, he's stops, still enough in his mind to be able to hear what I'm saying.  Then he says the word I gave him, sort of, and gets what he wants.  He's finding power in his word attempts and he hasn't had one sustained tantrum since he started the medication.  Not one.  It's amazing what you grow to appreciate.  Who cares that he doesn't "get" Christmas.  He hasn't screamed in weeks!

The medication is called Risperdal and from what I understand it's a serious anti-psychotic, part stimulant and part tranquilizer.  The stimulant addresses the ADHD and the combination of the two stabilizes mood and addresses extreme or exaggerated feelings and behaviors.

When a person gets extremely upset (as Cale tends to do over very small things such as dropping a piece of cereal out of his bowl onto the floor), a dose of adrenaline and a dose of cortisol shoot straight into the blood stream preparing the body for a "fight" or "flight" response.  Then, of course, the person has a "fight" or "flight" response (he comes unglued, throws the entire bowl of cereal, screams at the top of his lungs and bangs his head into the walls for at least twenty minutes straight, pinching the face of anyone who tries to comfort him).

This type of reaction is appropriate if, say, one were to find a mountain lion in one's kitchen.  However, since Cale can't tell the difference between a mountain lion and a piece of cereal hitting the floor (because he's so rigid in his thinking - one emotional response fits all negative situations), it's helpful for these shots of adrenaline and cortisol to be blocked.  That's partly what this medication does.  It keeps him from going over the edge.  Now, when he gets upset, it's much like how we would react to cereal hitting the floor.  It's irritating, but certainly not worth blowing a gasket over.

We usually go home for the holidays but we decided to stay put this year and celebrate Christmas in our tract house, christening it with the final stage of being home.  Since Cale was on this medication and not so wild anymore, we actually dared to allow all five of us to decorate a Christmas tree.  It took three straight hours of hanging countless bulbs and school-made, Popsicle stick ornaments to end up with a tree about to fall over from all the decorations being in the lower, left hand corner.  Cale helped by shattering all the pesky glass ornaments onto the floor and bouncing the plastic ones off of it too, just to check.  "The medication is working," Shane and I said to each other, "Look how calm and happy he is shattering those ornaments!"  Again, it's amazing what you grow to appreciate.

"Santa is coming tonight!" I shrieked on Christmas Eve., way more excited than any thirty-five year old should ever get about anything.  The look in Alden and Isabel's eyes was totally worth the blood vessel I almost popped in the midst of my enthusiasm.  We hung the stockings above the pre-fab. gas fireplace with care, and I managed to convince both Alden and Isabel that Santa really would be able to squeeze that massive gut of his through the gas line into the house.  Then we set out milk and cookies for Santa and "reindeer food" for the reindeer.  "It fills the reindeer with magic," I told the kids, "helping them to do the extraordinary!"

It was almost eleven o'clock before my kids finally fell asleep.  Shane and I had eaten Santa's cookies, making sure to leave big crumbs on the plate, and I was outside like a crazy person at midnight sprinkling "reindeer food" so I could prove the reindeer had really had their snack as they were taking off from the roof.

As I was standing in the driveway in my pajamas, feeling very tired and slightly sick from Santa's cookies, I stopped for a moment and looked down at the handful of "reindeer food" I was holding.  The intensity of the longing seemed silly, especially since I knew how much happier Cale had been during the past few weeks.  But I guess I still didn't trust it.  So I found myself wishing that the odd little mixture of Quaker Oatmeal and glitter might give us a little magic for the next morning too.  Then I sprinkled it onto the cement.

The kids burst in at 7am Christmas morning to inform me that Santa had filled the stockings and left presents.  Cale burst in with them, just excited because they were excited.  I instinctively wondered how long his "happiness" would last.  It was the first time he'd be in a house full of people, noise, and chaos (he usually disappears or screams under such conditions) since he started the medication.  "This is where the rubber will meet the road," I thought.

Groggily, Shane and I made our way down the stairs.  We made coffee and threw the casserole in the oven as family started showing up for the big morning.  The tree was bright and sparkly and completely brown.  I really hadn't noticed how dead it had become until our family members saw it.  I got it way too early in the first place and I really don't know how to care for them properly, so the little brown needles fell onto the floor in miniature, prickly truck loads as we pulled the presents out.   Still, it seemed to be turning into a beautiful morning.

We were half way through opening our presents when I realized how noisy it was with all the talking, laughter, and chaos.  It was even bothersome to me, yet Cale was still in the room.  He was sitting on the stairs looking at his presents, wondering, I'm sure, what they were.  I walked over and opened two of them for him.  He doesn't usually play with new toys (the rigid thinking again).  In fact, it usually takes him quite a long time to warm up to a new toy.  But he immediately started playing with his new toys in the midst of all the noise, and that's when I started to cry.  It was Christmas.  And everyone was happy.  He didn't cry one time on Christmas day.

The psychiatrist is a genius in my opinion.  The last time we saw her (just before Cale started the Risperdal) I told her I'd been giving him espresso for the ADHD and she didn't even bat an eye, "Well," she said, "the stimulants we give for ADHD are much stronger than coffee."

After I confessed to just how much coffee I'd been giving him and how much better he was doing in his therapies as a result, she decided to do a stimulant based medication instead of a non-stimulant based one even though he's only four years old.  She was interested to see how he'd do with the Risperdal since this medication has helped some of her other young, Autistic patients.

I haven't seen her again yet since he started it, but our next appointment is in January.  My plan is to kiss her a thousand times.  Do you think she'll mind?  I'll have to tell her that Dr. Chickenshit (the G.I. specialist she was so insistent that we see) refused to address the nutrition component for Cale's high cholesterol.  Hopefully she'll have some other ideas because the only problem with the Risperdal is that it has two side effects.  Can you guess what they are?  Yes.  Of course!  They're constipation and high-cholesterol.  And if this medication spikes his cholesterol even higher than it already is, she'll have to take him right off of it.

Oh hell.  The saga continues I guess.  But I'll tell you what.  If we never again have a Christmas when everyone is happy, I'll still have gotten my wish.  Thank you "reindeer food."

Flipping the Beetle

I've been to the mountains near Prescott a couple of times this year for blessed little weekends away from everything I think I know, quiet spots in the hurricane that goes on in this head of mine.  I went up once in September and again in October.  These mountains aren't like the ones I'm used to in Montana.  They aren't tall or jagged and my ears don't pop on the way up to them.  They're more like a soggy version of the Bull Mountains near Roundup Montana.  The only difference is that they're covered in leafy as well as pine trees.

When I was up there in October, the leafy trees were dripping giant chunks of orange and yellow and reddish brown, a seasonal occurrence that doesn't happen where I live.  The trees in my yard are green year round, so the leaves in this place filled a small longing.

The leaves had become heavy on their branches.  Occasionally one would snap free from the place where it had grown.  At first it would seem reluctant to accept it's sudden freedom and would stay suspended in the air for a long moment.  Then it would begin it's decent, glittering through the air all the way to the ground before landing softly on some quiet patch.  Sometimes a gust of wind would come up through the valley and blast a million sparkly leaves free.  They would fill the sky for that long moment, the dappled sunshine lighting them up from behind, before glittering in giant golden waves all the way to the ground.  It was a great big sparkly leaf show that baby Cale would've just loved.

This area, for some time now, has been having a real problem with beetles killing it's trees.  These beetles were everywhere during the weekend in September.  The women I'd gone up with and I had to be careful not to step on them.  They were huge, shiny, and gross.  They were stupid too.  Everywhere I looked they were lying on the ground on their backs, wiggling their little legs helplessly in the air unable to get up.  No one bothered helping them either because everyone knows what they've been doing to the trees.

One night I left my friends by the fire and went to use the bathroom.  As I entered I almost stepped on one of these beetles.  It was right in the middle of my path.  At first I stepped over it and moved on, but then I couldn't help but go back and kneel down to get a close up look.

It was so big.  I was completely creeped out by it but deeply intrigued at the same time.  It's shiny shell began and ended in sporadic places, a miniature, black coat of arms over the top of soft, yellowish tissue.  It had a weird head with tentacles sticking out what I thought was it's face.  It was belly up with it's round back stuck to the ground, it's little finger-like arms and legs wiggling frantically and creating enough momentum to twist it's body around in little half circles.  "How do you guys even get onto your backs?" I asked it.  The logistics of it seemed impossible, yet there it was.

I really wanted to to turn it upright again but I couldn't bear the thought of touching it.  I could just picture its arms and legs enclosing around my hand, like a bunch of little black fingers, and then not letting go.  Then I'd be stuck with it on my hand and have to freak out, screeching and trying to shake it lose, and then flicking it with the possibility of it landing on some other part of my body.  I shuttered at the thought and said, "Sorry dude.  You're on your own."

I went into the bathroom stall feeling a little guilty and immediately began producing rationalizations.  Then I began lecturing the naughty thing from behind the stall door, "If I get you up you'll probably go bite a tree and make it sick.  Do you know what you and all your little buddies are doing to the forest around here?  Of course you don't.  You're not smart.  You can't even stay on your damn feet."

I listened.  I could still hear it pattering around on the ground near the entrance.  "Stupid beetle," I finished.  

I came out out of the stall and began washing my hands.  Unfortunately, there was a mirror above the sink.  As I looked into it I began arguing with myself,

"I can't just leave it there like that.  Who am I anyway?"

"You're a decent person who cares about the forest."

"No I'm not.  I don't give a shit about the forest.  I just don't want to touch the gross beetle."

"You want all these trees to be here for Cale someday don't you?"

"Yeah, but I really don't think this one beetle is going to bring down the forest.  Besides, if I leave it there like that it will die."

"It should die.  It's gross."

"Maybe," I thought as I stared into my own eyes, "But is that who I am?  I'll think about this all night.  I'll probably come down here at three o'clock in the morning with a stick and try to save the damn thing.  Shit.  I may as well just do it now."

I searched around outside for awhile for just the right stick.  It had to be very long.  I finally found one that was pretty good so I went back in to where the beetle was still stuck to the ground, it's little arms and legs still wiggling frantically.  I slid the stick under it's back and closed my eyes, pretending it was nothing more than a shiny, black pancake.  Then I flipped it over.  It did look much more decent on it's feet.  It stood there for a moment regaining it's bearings.  Then it started it's long walk back towards the trees.

I recently told a friend of mine that all of the answers we need regarding Cale just show right up for us.  "They just show right up!" is exactly what I typed - with a smile on my face and all of the confidence of a woman with some faith.  I guess I didn't want to sound scared.  Heaven forbid.  What the hell's the matter with me that I don't want to sound scared when the truth, quite frankly, is that I get scared out of my fucking mind.  That I don't always trust I'll be able to figure out the right thing to do and that I certainly don't trust anyone else to be able to either.  Maybe if I just keep acting like I have faith, keep saying it, then I'll actually grow some.

Cale had some blood work come back abnormal last month.  The biggest concern was his cholesterol.  The psychiatrist and the pediatrician both panicked and immediately sent Cale to three different specialists (Cardiologist, Gastroenterology specialist, and allergy specialist) to find out why a four year old would have incredibly high cholesterol (the fourth specialist was the E.N.T. for his ears).  For the next week we had doctors appointments every single day (and we haven't even begun to address the ears) quickly followed by testing, testing, and more testing.  And after all of this testing, guess what they found wrong?  Nothing.  Well that's not true.  They discovered that he's allergic to wheat and corn.  I wasn't feeding him wheat anyway, and I stopped the corn that day.

Cale will only eat Rice Chex, Corn Chex (which I've stopped now), and bacon.  He pukes if anything other than these foods manage to sneak they're way into his mouth.  This is due to his "sensory processing issues" and his "rigidity" which would both take me too long to explain.  So just trust me.  He only eats Chex and bacon. 

The only thing these specialists can guess is that his bad cholesterol is elevated because of all the simple carbs. (Chex) he eats, but not because of the fat (bacon) he eats.  His good cholesterol is also high which means he's not eating too much fat.  So the bacon is fine, but putting Benefiber in his water twice a day is just simply not enough fiber.  In a nut shell, Cale needs more food over all than just Rice Chex and bacon.  Fruits, vegetables, and whole grains preferably (but not wheat or corn).  But, like I said, he pukes.

The only thing that has become clear to me in all of this is that some form of nutritional support is necessary for Cale.  And, of course, that is where these twenty first century, western medicine only, doctors have stopped dead in their tracks.

My medical professionals won't touch Autism from a nutritional standpoint with a ten foot pole.  They touch many other disorders from a nutritional standpoint.  But not Cale's Autism.  You know why?  I personally think it's because they're assholes.  Or maybe that's just how I'm feeling at this particular moment :)

It's really because there's a lot of controversy surrounding nutrition and Autism.  I personally try to stay out such debates most of the time, but from what I understand my medical professionals have a "professional landscape" they have to protect the reputation of and they don't want anything "quacky," even it's it's helpful, to compromise it.  I don't know for sure but it seems like they won't entertain anything that isn't scientifically proven (and, of course, they're excruciatingly slow to prove anything scientifically) because they don't want to seem like quacks.  All I do know for sure is that the medical professionals in our lives won't treat my son for high cholesterol from a nutritional standpoint. 

"The biopsy results of his stomach and upper intestines came back normal," the G.I. specialist looked me in eye today.

"Great!"  I said, "So now we know that he's able to absorb nutrition properly?"

"Yes," he said.

"That's excellent news.  So now what?" I asked.

"So just keep giving him the (fiberless) constipation medication twice a day," he continued.

"And?" I asked.

"And we should maybe see him back in two to three months," he concluded.

I couldn't believe it.  I'd always heard about it but I guess I thought that, being an actual medical necessity for Cale, this case might be different.  But no.

Something took me over completely.  I'm not ordinarily a confrontational person.  In fact, I hate confrontation of any kind.  I kind of wanted to just quietly go home and find a different doctor, but, like I said, something took me over.  I suddenly grew a ball sack and thought to myself, "How will these bastards ever face this if parents just keep quietly going home and finding different doctors?"  So I decided to try and get him to flip the beetle.

"The cardiologist said that his cholesterol is high due to the lack of variety in his diet.  And you agree?" I asked.

"Uuuh...yes," he answered.

"Well if nothing is wrong with his stomach or intestines, if he's physically able to absorb nutrition adequately, then it's simply a matter of getting proper nutrition into him to get that cholesterol to come down.  Right?"

"Uuh...well...yes.  I could have you see our nutritionist but you're already putting all of the right foods in front of him.  So I really don't think they'd be able to teach you anything new."

"Right," I said, "my knowledge about food isn't the problem.  It's the fact that he's Autistic and won't eat that's the problem."

He was sitting on a short stool.  He put his elbows on his knees and his face in his hands for just a moment.  Then he sat back up again and said, "Yes, he should eat more fruits and vegetables."

"But he won't," I reminded.

"He has lost weight since I saw him a few weeks ago, but all we can do is continue to monitor his weight.  You could give him Pedia-Sure," he tried.

"Pedia-Sure is made with milk.  We don't do gluten or casein, remember?" I reminded him for what felt like the six hundredth time.

His face went back into his hands and I could hear his breathing change.  I thought he might actually be hyperventilating for a moment.  Then he sat back up and said, "All I can do from a medical standpoint is put him on medication to force the cholesterol down, but it wouldn't be a pretty process."

"You wouldn't immediately start a forty year old on medication for high cholesterol, let alone a four year old would you?  No.  You'd start with diet.  I do want to see your nutritionist," I said.

His face went back into his hands so I couldn't see his eyes.  He breathed and squirmed on that stool, his head down near his knees.  He was wrestling with it.  "Come on," I whispered in my head, "Flip it over.  Come on!!"

He sat up again and repeated, "All I can do from a medical standpoint is put him on medication," his face going right back into his hands after the words came out of his mouth.

"I can give Cale liquids out of a medicine syringe.  He'll take anything if I offer him a sucker afterward.  Do you have a Pedia-sure that's casein free?" I asked.  And that snapped him.

He came up out of his chair repeating loudly, "All I can do from a medical standpoint is put him on medication for the cholesterol.  We'll repeat the blood work in two to three months and if his cholesterol is still high we'll start medication."  He made it clear that the discussion was over.

Just in case you're confused, what I was asking Dr. Chickenshit for was medicinal food.  Some sort of highly concentrated, easy to absorb, nutrient filled, liquid supplementation.  Something that I'd really rather not hop on line and try to take a flying crap shoot guess about myself.  Something that should be prescribed and monitored by a doctor.  I know he knows about such things because I had a conversation about it with his nurse the day we took Cale in for the endoscopy.  And she told me that he knows about it, but won't touch it.

Cale is four years old, has severe developmental delays, is losing weight, and has high cholesterol.  Ordinarily, I would think, they'd want to make sure that the right nutrition was entering such a person's body.  But unfortunately, such things aren't "medically proven" yet or something for Autistic kids, and the doctor needs to protect the reputation of his western medical landscape - or himself - rather than help my son.  He decided who he is.  And it looked like it hurt.  Poor guy.  How would you like to be put in the position of not feeling able to help a real beetle?  And my guess is that he's put in that position a lot.  Maybe that's why he reacted so strongly.  Or maybe he was just constipated and this is all in my imagination.

I was just reminded of a dear friend of mine who likes to say, "God is bigger than the boogie man."  And I'm reminded again of who I want to be when I'm looking in the mirror.  Do I really want to be afraid all the time?  No.  I really don't.  I know the answers will come.  They always have before and I have no reason to suspect that it'll be any different this time.  It just doesn't always happen in my way or in my time.  But they still always come.    

I could've walked around for the rest of that weekend flipping those beetles over.  It was tempting.  There were so many poor, helpless, stupid little things.  But I guess my heart just isn't that big.  "Besides," I kept rationalizing, "helping those beetles one by one could actually bring the whole forest down over time."  In the end I only helped the one.  And when I went back down to the bathroom on our last day there, guess who was right back in the same spot, little black legs wiggling in the air?  Stupid beetle.

The Thanksgiving "Mumpkin"

Thanksgiving is my favorite holiday.  I'd like to say this is because I'm so thankful for everything, but it's really because of the food.  I mean, at what other time during the year can one pig out like that and not be considered a total glutton?

Christmas is my second favorite, but only because I love watching my kids squeal in delight.  They don't do that on Thanksgiving.  They start to get excited when I tell them everyone's coming over for dinner, but when they ask, "What will we be doing when they get here?!" somehow, "Eating TURKEY!!" just doesn't produce the same effect as "Opening your CHRISTMAS PRESENTS!!"  It's kind of funny watching them try to figure out my enthusiasm.

I want everything to be perfect for Thanksgiving at my house.  I always have.  It was always perfect at my grandmother's house when I was growing up, and it's only right that I should carry on the tradition.  My dream has always been to have a comfortable, family home for holiday dinners.  A quiet reprieve for my family from the grind of daily life.  A place of warmth where everyone can celebrate beauty, abundance, and togetherness - where we can laugh and remember what life is really about and why we live it.  I've always wanted it to be a beautiful place on Thanksgiving, perfect for reflecting on the passage of the year and for celebrating fresh hopes, new dreams, and all the anticipation of a new holiday season. 

I pour all of my energy into creating an environment like this for Thanksgiving.  In addition to the cooking, I always try to do some sort of creative decorating project.  "I am an artist after all," I always think, "There should be something beautiful to look at around here."  And I tend to focus on the table because that, after all, is where the food will be.

There are times when I'd really like to wiggle my nose and turn into Martha Stewart.  However, I always end up as some semblance of Roseanne Barr on Meth instead.  This is because when things begin to look like they're not going to go my way, I attempt to force them into submission.

This year I found a wonderful table centerpiece in a magazine.  It was called a "Mumpkin" and was basically a pumpkin that was covered in flowers.  It looked adorable in the picture and seemed easy enough to do, so I bought pumpkins and mums and followed the directions.  It said to take a nail and a hammer and gently poke holes into the pumpkin all over.  Then it said to stick the mums into all the little holes and the end result would be a perfect, pumpkin shaped, flower covered centerpiece.

At first I set the pumpkin neatly onto a piece of newspaper on the kitchen table and began trying to tap the nail into it.  It was a very hard pumpkin though.  Pretty soon I had the pumpkin in between my knees, trying hard to pound the nail holes "gently" into it.  After about twenty minutes I had succeeded in creating two holes and had sore hands because I kept hitting my fingers with the hammer every time the nail would finally slide off to one side.  I was becoming quite impatient by this point.  "God," I thought, "This is going to take all night!  And I don't have ALL NIGHT to make a freakin' centerpiece!"  So I asked Shane for his drill.

Upon hearing the request for the drill, Shane stopped and looked at what I was doing for a moment.  I could tell that a thought entered his mind, wrestled with whether or not it should find words, and then, defeated, gently slid away.  Reluctantly, but without saying a word, he went into the garage and produced a drill.

I held that pumpkin down, fired up that drill, and went at it as though this had become a personal matter. It went well at first.  The drill bit dug successfully through the hard, outer layer and finally sunk deep into the pumpkin.  But then, as I pulled the bit back out again, it pulled long strings of pumpkin guts out with it.  I really wanted my idea to work so I kept drilling the holes anyway, but before long it looked like the pumpkin had actually exploded in the kitchen.  I had little pumpkin flesh dots and strings of guts all over the table, the walls, the floor, and me.  There were strings stuck to my pants, covering my shirt, dripping off of my face, and the pumpkin looked like a disheveled head with long orange hair.

I did my best to stuff the gut strings back inside all of the little holes, and the flowers did end up covering up most of the pumpkin's indecency, but the whole process took me over an hour and half to complete.  And the pumpkin, which turned out to be quite lopsided, kept falling onto it's side on the table.  It's little green stem wasn't poking through the flowers out the top like it was supposed to be.  It was poking out the front.  Shane kept giggling at it when he walked by. 

We bought all new dishes for Thanksgiving this year.  Cale recently went through an obsession with the sound of shattering glass and broke nearly all of my dishes one by one.  He would wait until I was busy and then push a chair over to the counter.  He'd climb onto the counter top and open the cupboard, grab a dish, stand up holding the dish over his head as high as he could reach, and then drop it onto the kitchen floor.  He'd absolutely squeal in delight over the sounds of the shattering glass.  I would generally be upstairs doing something and hear the chair scooting across the kitchen floor.  Then I'd run to the kitchen as fast as I could, catch the very end of his display, and then catch him mid-air as he dove off the counter towards the glass on the floor.  Oh how that scared me.

The only glass things that survived were the couple of remaining pieces from an old set of nesting bowls that were a wedding gift from the dad of one of my oldest friends.  He didn't get them because I hid them.  The only actual dishes that survived were a few plastic kid plates and an old Corning ware set that was a hand me down from my Mom.  This I didn't hide.  It's an incredible set really.  Not only is it inexplicably ugly, but each piece has managed to bounce repeatedly off of granite without even the slightest chip.

When Thanksgiving day arrived, we were faced the question of how to set the table with all the new dishes with Cale around.  He climbs onto tables quickly and easily, and we feared that the temptation would be too great for him if we simply left breakable dishes out at his disposal.  And since I'm a Martha Stewart wanna-be, paper plates would not have sufficed for Thanksgiving dinner.

We knew we'd be busy cooking and wouldn't be able to keep an eye on the table all day, and we knew that once Cale discovered the dishes on the table it would mean grabbing him off the table top and putting him back onto the floor six hundred and fifty thousand times during the course of the afternoon, so we thought hard and came up with a brilliant plan.

We decided that all the new dishes would stay on top of the refrigerator until Cale went down for his nap.  Then we'd set the table and not get him up from his nap until we all sat down to eat.  Now, Cale doesn't actually sleep at nap time anymore but sometimes we pretend he does so that we can get things done.  He plays well in his room by himself and this is often a comfort to him.  However, as we found out, if he stays in there too long, he's very energetic when he comes out.

We locked him in his room at nap time (judge if you want, I don't mind) and there he stayed quietly for about an hour and a half.  Then, as soon as we were all sitting down to dinner, Shane's mom got Cale up, changed his diaper, and then put him in his booster chair at the table to join us.  I thought for sure this was a fool proof plan.

Well, shockingly, the last thing extreme ADHD boy wanted to do after being in his room for so long was to sit down at the table.  So he unbuckled himself, got out of his booster chair, and ran away.  I went and got him and put him back in his chair again, showing him his food.  But he immediately unbuckled himself, got out of his chair, and ran away again.

"Did you give him coffee today?" Shane asked me in a whisper.

"Three teaspoons," I whispered back, "but coffee quickly loses it's effectiveness and you have to drink more and more to get the same effect.  That's why they don't use it for ADHD on a permanent basis."

"Did you call the psychiatrist yesterday?" he asked.

"Yes, but she's out until Monday," I answered.

"Oh," he continued, "We shouldn't have left him in his room all that time.  Now the last thing he'll want to do is sit still."

"Well," I answered, "it was either that or a pile of broken dishes.  It's hopeless to try to figure out the right answer ahead of time isn't it?  Oh, I thought for sure this would work!"

I tried one more time, for good measure, to put him back in his chair at the table with us but he simply unbuckled himself again, got out of his chair again, and ran away again.  That time we let him go.

I figured that with everyone eating off the dishes there wouldn't be much danger of crazy boy shattering anything so we decided to let him go ahead and run around.  I really didn't want to chance him ruining the dinner that I'd worked so hard to make perfect.  I didn't want to give him any reason, what-so-ever, to start screaming.  Because when Cale starts screaming, he's not always able to stop.  Sometimes he'll cry for an hour straight before he finally calms or falls asleep.

One of his therapists recently explained to me that kids with Autism struggle a great deal with self-regulation.  What that means is that once they get worked up, they aren't always able to calm down.  A friend of mine from the support group has an Autistic son who sometimes screams for five hours straight before he finally calms down or falls asleep.  It happens.  But I didn't want it happening while our family was trying to enjoy our perfect Thanksgiving dinner.

Well, of course, it didn't take two minutes before he got pissed off about something in the family room and started screaming.  We brought him to the table again, offered him food, offered him toys, hugs, markers, suckers, all of his favorite things in a desperate attempt to sooth him, anything to quiet him just long enough for the family to enjoy dinner.  But he didn't quiet.  He kept screaming and screaming in spite of our efforts, so I finally locked him in his room again where his screaming wouldn't be quite so loud for all of us.  Then he continued to scream and slam himself into the walls while the rest of us ate turkey and pretended to be a civilized family.

"So," I asked my dad in between bites of stuffing, "how were the roads on the way down?"

AAAAAaaaHAHAHAHAHAhAHAAAAAAAAAAAAAAAHHHHHHHAAAAaaaaaaa!!!!  Slam, Slam, SLAM!!  aaaaahhhhhhahhhhahhhhha!!!!!  SLAAM!

"Uuh well, you know, they were uuh pretty bad for the first hundred miles or so but then they lightened up," he answered, his eyes trailing up the stairs.

SLAM, slam, AAAAAAAUUUUUUUUHHHHHAAAAAAAaaaaaaaaahhhhhhaaaaAAAAa!!!!!!!!!

"Mom didn't make it to Grandma's because of the roads," I continued, "I guess they're bad all over Montana."

AAAAAAAAAAAAAAAAAaaaaaaaaaaaHHHHaaaaHHHHHHHaaaaaaaaaaaaaHHHHHaaaaaa!!!

"Uhh, yea, they're bad all over up north," he replied.

AAAAAAAAhhaaaaaaahhhhhhhhhhaaaaaaaaaaaaaahaaaaaaaaaaa!!  Slam, SLAMMM!!!!!

"How long do you plan to stay in Arizona Jack?" Shane's Mom asked my dad.

AAAAAAHHAAHHAA SLam SLAM!!! aaaaaaahahaAAAHHHHHHAAAAAAAAAAAAA!!!!

"Oh, huh, probably through New Years," he answered.

aaaaaaaaaaAAAAAAHHHHHAAAAHAHAhAhhhhhhhhaaaaaaaaaaaaaaaaaaaaaaa!!!!!!!

"This turkey is so moist Shane," she said, a piece of meat dripping off her fork.

"We bought a Butterball and Shane brined it last night," I butted in, "It is good isn't it?"

AAAaaaaaaaaaaaaaaahhhhhhhhhhaaaaahaaaaaa!!!  Slam.  SlaaammMM.  SLAAAAAMMMMM!

"It's very good Shane, really tender," everyone complimented enthusiastically.

On the outside I continued to make chit chat about snow, white meat versus dark meat, and pumpkin soup.  But on the inside I was fuuuuuming.  It dawned on me as I sat there that a year ago, on Thanksgiving day, I didn't even know yet that anything was wrong with Cale.  He sat quietly at the table with us and ate turkey, green beans, mashed potatoes and pumpkin pie.  Now he only eats cereal if he eats anything at all.  He has regressed in so many ways since a year ago, and his progression looks like one step forward, two steps back, three steps forward, one step back, etc.  He is moving forward (at least I think he is), but it's untidy and unpredictable at best.

I felt angry.  In fact, I found myself wishing that I could drill holes into God's head.

"Why did you give me a child that ruins Thanksgiving?" I said to God under my breath, "It's not enough that our whole world has to revolve around him the rest of the year?  You can't give us ONE meal in peace?  We're supposed to be enjoying a quiet reprieve.  We're supposed to be reflecting on the passage of the year and celebrating beauty, togetherness, fresh hopes, and new dreams.  How are we supposed to do that with all this damn screaming?  My parents are going to have a terrible experience at my house!  How could you do this?!  And how many Thanksgivings will he ruin anyway?  How long is he going to be like this?  Oh that's right.  FOREVER.  He's going to be like this FOREVER!!!"

I had just about started to cry, right there at the table, when I looked down at the "Mumpkin" I had worked so hard to create.  It was pointing it's little green phallic symbol right at me.

I think I might've actually giggled out loud.  I mean, really?  How seriously did I have to take myself, and my "perfect" Thanksgiving, anyway?

I looked over at Alden and Isabel and they were eating their dinner, playing with their food, and competing for their grandparents' attention like nothing out of the ordinary was happening.  I looked over at Shane and he was still talking about soaking the turkey the night before.  And I realized that my beautiful family had learned to enjoy themselves in spite of the elephant in the room (the thing we all weren't talking about).  So I probably should to.  

Our poor parents, who aren't quite as used to Cale as we are, at first kept looking up the stairs like an eagle might burst through the bedroom door and take flight in the living room.  But even they, rather quickly, began laughing and enjoying themselves.  And it dawned on me that it will probably always be a must, at my house, to carry on and enjoy whether our little elephant is happy or not.  It also dawned on me that Thanksgiving dinners are going to be different around here than I'd always before dreamed, but that doesn't mean they aren't going to be perfect.  

As I sat there reflecting on just how much laughing and enjoying are a matter of choice no matter what is going on around me, Cale began to quiet.  And I realized once again that I need to be consistent in my feelings and actions even if, and probably most especially when, my child can't be consistent in his.  Change the things I can change, and accept the things I can't.

Do I wish he could've joined us for dinner?  Oh...you'll never know how badly.  It does something unspeakable to me when I can't comfort my son, and the idea that he might spend holidays alone because he cannot behave appropriately terrifies me to death.  But I have to trust that God knows what he's doing with Cale.  And I have to trust that he knows what he's doing with me, even if it's as silly as pointing green stems in my direction.  Anything to get me to laugh at myself and lighten the hell up.

Coffee

I love coffee.  And I love Barnes and Noble.  The little green chair near the magazines is one of my favorite places to sit and drink thick milk laced with espresso while reading home magazines about contemporary houses on hills far, far away from suburbia.  I devour artful design like shortbread cookies at Christmas time.

I like to put my own houses together in my head.  They're usually sided with wood and thick, drippy, rust colored metal (not one inch of stucco) and have floor to ceiling windows that look out onto some sort of courtyard swimming pool surrounded by leafy green trees.  I've designed houses in my head for many years now, but for the past eight months or so these houses have included accommodations for my future adult children who will most likely be living with us for the rest of their lives.  The trees over the pool are for Cale.

Shane and I pulled up to Barnes and Noble today, walked through the parking lot full of loud, chatty people, and went into the bookstore.  It always amazes me that these bookstores are the same everywhere - almost as identical inside of Cracker Barrels but not quite.  Upon entering, I have a sense of place, that I'm at Barnes and Noble, but at the exact same time lose the sense of where I'm at in the world.  I often forget which city I'm in inside of a Barnes and Noble, and walk out again later to get slammed with a twisted sense of time and direction.  "Is that 24th Street or Bell Road?" or "What month is it?"

Sometimes if I'm alone and not paying attention, I accidentally walk to the wrong side of the building (to where the car would be parked in Billings instead of Phoenix) before I notice.  And sometimes, even when I am paying attention, I still can't get an immediate sense for the street.  That's when I use the weather to tell me where I am - walking into a dry freezer is Billings.  Walking into a dry, hot oven is Phoenix.

As I attempted to make my way through to the magazine section today, I was stopped by a table that sat right in the middle of my path.  On this table was an ivory colored sign with green writing that said Inspirational Stories.  I stared down at the books on that table for a long time.  All the usuals were there - Eat Pray Love, Cherries in Winter, The Boy Who Harnessed the Wind, and I found myself thinking about how sweet these titles were all bunched together like that.  It got me thinking about the title of my own book which I'm currently writing.  I'm nowhere near choosing a name for it yet, but lately I've been considering the title F U U U C K.  What do you think?  No?  You don't think it would end up on that table?

The psychiatrist diagnosed Cale with Extreme ADHD in addition to the Autism about a month ago.  But at the time, the ADHD was the least of our worries since Cale was still banging his head on the ground.  Still, she said she wanted to put him on something for the ADHD and we consented whole-heartedly ("whatever helps" were our exact words).  First, however, she needed a blood sample so she could make sure everything was functioning properly before she introduced medication.  So we made an appointment to see her again a month later and I took Cale into the blood lab the next day to have his blood drawn.  Then we waited.

While we waited, I started Cale on cod liver oil because I read an article about how Autistic children tend to have serious deficiencies in vitamin A.  Cod liver oil, being the only food that contains high enough quantities of natural vitamin A to replenish such deficiencies, was what was recommended.  Therefore that's what I put him on.  Shortly after that SARRC called and said they had an opening (finally) to start ABA based behavior therapy with Cale.  And thank God.  It had gotten to the point where Cale was hurting himself and others, all day every single day.

Over the next three weeks the symptoms of the Autism were reduced somewhat by the ABA therapy and the oil.  The constant tantruming was reduced a ton and he even started saying a few words again.  However, at the exact same time, the symptoms of the ADHD seemed to absolutely skyrocket.  Maybe he'd always been overly active and I just hadn't realized it with so much other stuff going wrong.  I don't know.  But by the time the appointment with the psychiatrist came around again, I was desperate for her to relieve the ADHD symptoms.  I'm honestly not sure which is worse - a screaming head banger or a child who's happy as a clam but climbs the refrigerator six hundred times during the course of preparing dinner.

When we finally went in for the appointment, we waited for approximately two minutes before Cale started pulling the cushions off all the chairs in the waiting room, opening and slamming the door between the receptionist's desk and the waiting room, opening and slamming, opening and slamming, opening and slamming, turning the lights on and off, on and off, on and off, on and off, on and off, while the receptionists (who had no idea what they were up against) made futile attempts to stop him with, "No no sweetie, go play in the waiting room."  He completely ignored them.  It honestly makes no sense to my child why you would acknowledge it, in any way what-so-ever, when someone is talking to you.

After the second time he tried to escape out the What? Are we stupid in our clinic for children with a front door that easily pushes right open onto the parking lot? front door, I finally looked at the reception and said, "Look.  I realize that we haven't been waiting long, but we have a very narrow window of opportunity here before he starts actually breaking things.  And to be perfectly honest with you, I'm too tired to stop him."

"Oh," she said, "Well let me put you into a conference room to wait.  There's nothing he can hurt in there and he can't escape.  How would that be?"

"Thank you," I said gratefully.  And we were locked in a conference room where Cale turned the light on and off, on and off, on and off, on and off, on and off, as fast as his little hands could flip that switch during the entire time we waited.

I had a blinding headache by the time we finally saw the psychiatrist and I told her immediately that we were ready to have him medicated for the ADHD.  She told me, however, that she was very sorry but that Cale's blood work had not come back normal.

I sat there with my mouth hanging open and stared at her.  That's the moment the potential title for my new book landed softly in my head.

Cale has to see four different specialists next week, all of whom have waiting rooms just waiting to be destroyed.  Some of them are several hour long visits (I hope for their sake they have conference rooms).  And the fact that we got him in to four different specialists in a week's time (incredibly fast here in Phoenix) has me wondering exactly how worried I should be.

His blood sugar is low, some sort of other blood levels are high, and his cholesterol is high.  Very high.  High for an adult high (he's four).  He has to see a pediatric cardiologist at the Pediatric Cardiology Institute at the Phoenix Children's Hospital (a place that has a year long waiting list for everything else I've ever tried to use them for).

The psychiatrist asked me if I'd ever heard of the gluten/casein free diet and told me that it is strongly recommended (at least worth a try) for autistic children.  I told her that I've had him on that diet for over a year now already.  Then I told her that I had just put him on Cod liver oil and that he's always eaten a lot of bacon, but she told me that the high cholesterol couldn't possibly be due to his diet especially since he's already gluten/casein free.  She said he'd have to be drinking cupfuls of lard every day to get it that high through diet.  So the fact that it's high, and that it's not due to his diet, means that something is going wrong.  And no, of course, they couldn't give me any clues as to what that might be but they did let me know that they won't be starting any ADHD medication until they fix whatever it is.

The following afternoon, after Cale's Habilitation therapist and I had chased him around the house for three straight hours (literally) trying everything we could think of to engage him in play, I got desperate.  He would not stay in one spot in a room and play for more than three seconds at a time, nor would he stay in one room for more than twenty seconds before he'd run into another room.  His behavior was absolutely wild, punctuated with moments of uncontrollable screaming, and flipping back and forth from crying to laughter to crying to laughter.  He was running and running and running, and breaking everything he was strong enough to break. 

We even tried putting him in the tub and giving him a cup to pour water with.  This ALWAYS calms him down.  He poured the water for about five seconds, laughing, and then for no reason what-so-ever screamed, threw the cups, and got out of the tub soaking wet and naked and ran away again.  This threatened me a great deal because the bathtub and a cup is my only fool proof trick to calm my son when nothing else will work.  And it didn't work at all.

Like I said, I got desperate.  Really, really desperate.  I knew his occupational therapist was coming next to do a therapy session and the idea of chasing Cale around the house for yet another hour with yet another therapist was just too damn much.  I really wanted it to be a successful therapy session.  Plus I was worn out and my feet were killing me.  So I gave him three teaspoons of my dearest friend, cold coffee.

What happened next was nothing short of an absolute miracle.  It took about twenty minutes for the coffee kick in, but then the transformation was swift and complete.  He calmed.  His movements slowed waaaay down.  About then the O.T. showed up and Cale proceeded to stand in one place at the coffee table and put puzzles together with him for the next forty five minutes straight.

I sat in the chair, exhausted, and watched with a mixture of pure awe and a terrible sense of guilt.  The O.T. was sitting on the floor at the coffee table watching Cale carefully and he finally said to me, "I've never seen him put puzzles together before."

I was slouched in the chair with my hand covering my mouth lest my anxiety escaped.  And I actually startled when he spoke to me.  I looked at him wide eyed, with as straight a face as I could muster.

He kept watching Cale with that confused crinkle between his eyes.  Then he continued, "I didn't know he could put puzzles together.  I've seen him rip them apart and throw the pieces at people lots of times, but I've never actually seen him put them together."

Cale looked at him and quietly clicked another piece into place.

"Huh..." the O.T. continued, watching Cale very suspiciously.

"Okay OKAY!!" I finally confessed, "I got desperate!  I wouldn't have done it but he's driving me crazy!  We chased him around the house for THREE HOURS before you came!  And...and...well...I gave him three teaspoons of coffee twenty minutes before you got here."

The O.T. immediately looked at Cale with big eyes.  And Cale looked back at him, right in the eyes, just before he clicked another piece into place.  Then, very slowly, a smile spread over the O.T.'s face.

"He could just be tired," I said, "He did run circles for three hours straight."

"He doesn't look tired to me," the O.T. said, "He's making small, controlled movements with his hands.  He's holding still, listening, making eye contact, and focusing on his activity, none of which he'd be able to do this well if he was tired."

I haven't had the guts, with all that is going on with Cale medically, to give him coffee every day.  I did, however, give it to him before ABA therapy yesterday during which he didn't cry one time.  He also said about fifteen new words.  Let me say it again in case you missed that - FIFTEEN NEW WORDS!!!

I can finally see all these giant puzzle pieces in Cale's life - treatment for the Autism (which for Cale is a gluten/casein free diet, ABA therapy, other therapies, and cod-liver oil).  And these treatments, now that they're all happening simultaneously, seem to be causing all these sudden connections in Cale's brain that he doesn't yet know what to do with.  But his therapists and I can help him with that.

Then there will be treatment for his medical problems.  And now there's a potential solution for the ADHD too, although I'd rather have the psychiatrist medicate him instead of me.  She will though.  Eventually.  Especially after I tell her I'll be doing it myself with espresso until she gives him something more appropriate.  All these things that have previously looked like one and only, impenetrable parts of dealing with Cale that we'd have to learn to live with, are now starting to look like puzzle pieces that will hopefully all come together soon to help him make some real progress.

I don't actually allow myself to expect Cale to ever be different than he is right at this moment.  I fully expect a non-verbal forty year old floating on his back in the courtyard pool, staring at the leaves in the trees above him.  But I do need to be able to look out that window while I drink my coffee and watch him and know that I did absolutely everything I could to help him be his best him, for whatever that turns out to be.  And you know why?  Because getting him to be a certain way is not what this is all about.  He's perfect already.  Getting me to be the best me is what this is all about.  And that means I really can't call my book FUUUCK.  Damn it.

The Tooth Fairy

Alden, my seven year old, believes in the tooth fairy.  This is because he has a child-like, irrational, and wonderful imagination.  It's also because I've described her to him in detail.

She's five inches tall, quite fat, and is several hundred years old.  Therefore her blood pressure is probably somewhat elevated.  This is the reason we put the tooth in a small, easy to carry, zip lock snack baggie for her (but of course it's really so we don't lose the tooth in the sheets).

She wears a small gray dress, a tiny pair of silver glasses, and looks like a little grandmother with her chubby pink face and her curly gray hair all tucked up in a little bun on top of her head.  She does have a wand but it doesn't do magic, so it's often more of a hindrance than anything.  She still carries it around with her though because, after all, she is a fairy.

She gets a bit weighted down as she flies due to the money she carries.  She should carry her quarters in a little backpack because it would be easier on her hips, but she's an old-fashioned kind of woman and thinks it more fashionable to carry a purse.  She tends to run out of breath flying to his room at night due to this purse full of quarters, her obesity, and her rather small set of wings, so she often has to stop on his shelf for a little rest before collecting his tooth.

"But why does she collect kids' teeth?" he asks.

"Oh," I say, "because she LOVES kids.  And she LOVES teeth."

"But why does she bring quarters?  Why can't she bring fifty cent pieces?"  This one caught me off guard.

"Well, fifty cent pieces are rather heavy for an old fairy with high blood pressure to carry," I answered.  Thankfully he didn't make the connection that two quarters are probably the same weight as a fifty cent piece OR that it would be smarter to carry dollar bills.

One day Alden lost a tooth and didn't tell me.  Instead he got a small, easy to carry, zip lock snack baggie out of the drawer all by himself, put his tooth in it, and then stuck it under his pillow that night.  I had no idea.  The next morning he came into my room crying and genuinely heart-broken.  It took him a few minutes to tell me what was wrong.

"The tooth fairy stole my tooth," he finally said in between sobs, "but it's okay.  Sh Sh she can have it."

"What?!  You lost another tooth?" I exclaimed, immediately suspecting what might've happened.  "Oh sweetie, don't worry.  The tooth fairy never steals teeth," I continued, "I bet that we can find it in your room."

We went into his room.  Thankfully, and as suspected, the baggie had fallen down the side of the mattress and was on the floor in between his bed and the wall.  It was hidden really well and took some serious effort to get to.  Thank you, thank you God.

"Here it is!" I said, "It fell into this crack.  That poor old fairy probably couldn't squeeze her fat little butt into there!  What if she had gotten stuck?  Can you imagine if you had woken up to a fat little fairy butt trapped between your bed and the wall?"

He giggled.

"We'll put it where she can find it easily tonight okay?" I asked.

Alden smiled big through his tears.  He was quite relieved that the tooth fairy could be trusted again.  "Okay!" he answered.  And the lovely little woman left him extra money that night for all the trouble.

It's a bit iffy isn't it?  This business about the tooth fairy?  I probably wouldn't do it at all except that I have this idea that happiness is more about the "believing" than it is about the "what's believed."  The one who "doesn't believe" is always the miserable one.  Have you ever noticed that?  Like in the movie Polar Express where the angry ghost on the top of the train lives alone in the blizzard and tries to stay warm by drinking his own sludge.  He goes on and on about not wanting to be "duped," "brainwashed," "mis-lead," or "lied to."  So he chooses not to believe.  And he's probably right, by God, but he's miserable and alone.

Alden may be my only chance at living out fantasy, so he'll have to tolerate being lied to. I'm currently trying to figure out how to get onto my roof on Christmas Eve. with a hoof making noise maker of some kind. He can call me a liar later if he needs to. I'll just explain my selfishness, that he was my only chance, and that he can be mad if he needs to be.

"Mommy needed to believe in Santa and the tooth fairy sweetie. We all had to make sacrifices," I'll say.

I worry deeply about Cale.  What if he never understands abstract things?  He's four now and his Autism is becoming more and more pronounced.  What if he slowly turns into some semblance of that guy on top of the train?  Off in his own world all alone?  That's where he spends most of his time already. 

How will I ever be able to talk to Cale about God or spirituality in a way that makes sense to him?  I don't have specific enough beliefs about God to create a concrete story and I certainly won't be making one up.  That's for each to do on his/her own.  But how will he do that if he can't even grasp something that's semi-abstract like the tooth fairy?  I know I'm getting ahead of myself.  He doesn't even have a label for the pointy white things in his own mouth yet I'm worried about him believing in the tooth fairy!  But that's precisely my point.

Cale has been horrible this past month.  Last week as I wrestled clothes onto him while he screamed and repeatedly kicked me in the face and chest during the process, the possibility of future institutionalization suddenly became very real to me.

I can sometimes see this future decision off in the distance, looming there at the other end of the tunnel like a train powering down the tracks my way.  Most of the time I ignore it.  But when I'm getting kicked in the face, all I can see is that train coming.  I'm starting to imagine what it might be like to have to decide whether to live with Cale abusing himself, me, his other caregivers, and my other children OR to send him to live elsewhere.  I can already feel the guilt that accompanies the knowledge that I don't know how to provide the structure and safety my own child needs.

The possibility of a decision like this bothered me badly for most of last week. It was like a fly hitting one of those zapper things. You know the ones? It keeps zapping the fly, making that mechanical little snapping noise over and over again long after the fly is dead. Like that. I spent damn near the whole week shaking and crying. I know from past experience that this is often how the acceptance process begins though. Shaking and crying.

I really do have more hope than this for Cale most of the time, but I also don't want to live under the umbrella of any illusions anymore.  And the way his behavior has been the last few weeks...well...let's just say it's safe to assume that if he stays this way forever then he won't be able to stay with us.  That is, of course, unless we can afford to hire couple of bouncers to get him dressed in the mornings.

I have had two terrifying experiences this past month.  One was when Cale figured out how to unbuckle himself from his booster chair.  So containing him in any way, other than simply holding on to him tightly until he stops banging his head on things, is officially a thing of the past.  The other just happened over the weekend.  It targeted my real live wish that he'd not get any bigger.  "Oh my God, " I said to Shane on Saturday morning, "his pants are too short!  Shane?  Shane?!!"

"Yes?" Shane replied quietly.

"He keeps growing, look here's proof!  His pants are too short again!!" I continued.

"Uh huh.  Buy him some new ones, we have the money."

How is that men always seem to miss the point at first?

"But he's getting all this therapy and isn't making any progress!  He keeps getting bigger and bigger, but his brain doesn't seem to be catching up.  How long will we have to wrestle clothes onto him while getting kicked in the face?  Will he be doing this at eight?  At twelve?  At thirty?"

"I don't know," Shane said sleepily, "Maybe."  Shane is under no illusions either.  He just tends to be calmer and less afraid.

Did I mention that Cale has been horrible for the entire past month?  Horrible.  He's put fresh holes in his bedroom walls.  Of course we do live in the world's cheapest tract house inside the world's thinnest sheet rock.  If you breath on the wall wrong it cracks.

He's been slamming himself into corners and walls, giving himself multiple bruises and one black eye.  He's been beating up on me, his respite care lady, his therapists, and his teachers.  He got stung by a bee Sunday evening and we didn't notice because all of his screaming wasn't anything unusual.  He screams ALL the time and my nerves for it have all been fried to bits.  So how am I supposed to know when something really is wrong?  I didn't actually notice it until I saw the stinger hanging out of a massive red welt on his knee the next morning.  What if that had been a black widow (not an unusual visitor right out in the open here in Arizona)?

I've gotten notes home from school almost every day about his screaming and "pinching" the teachers and other kids.  And I know they're putting it mildly because Cale's "pinches" involve grabbing entire hand fulls of skin and trying with all of his might to pull it off.  It ALWAYS leaves bruises on me.  He did this to some poor little girl at the baby sitter's last Friday night and now we can't take him there anymore.  We probably should've known better than to take him out in the first place.  Instead we should just all stay at home twenty four hours a day, seven days a week, because we have Cale.  Oh sorry.  The sarcasm isn't a pretty color on me.

The doctor is sending Cale to a G.I. specialist to find out what's going on inside his guts (literally).  He's been going about four days between poops in spite of medication for constipation and the vitamins.  They think there's something wrong that could be causing the agitation.

You know, just once I'd like to take one of my children to the doctor and have them say, "Nope.  Nothing's wrong, you're just an over-protective mother," instead of, "Uh-oh...something's definitely really wrong here!"

My first question for the doctor was of course, as always, "Why doesn't he just SAY that his tummy hurts instead of giving himself and me black eyes?  Oh that's right.  It's because he doesn't TALK.  He's four and, in spite of all this therapy, still not able to say one damned word!  Instead he screams and hurts people."  Sometimes I actually find myself beside myself.

The doctor looked at me with that crinkle between her eyes.  I think she thought I was being dramatic until she bent over to put the stethoscope on Cale's belly.  As she pushed the cold, flat metal onto his warm skin he grabbed her hair with both hands, pulled her head down, and tried to "pinch" her face.

"Oh be careful!" I said grabbing his hands, "Don't let him get your face."

She sat back up a little stunned.  Then she wrote a few things down before continuing her exam.

"He's seen the psychiatrist already," I pleaded, "he'll be starting a new medication soon that I'm sure will help him."

"Oh good," she said and gave me a smile that said, "Relax.  It's okay."

We discussed a few of the other medical problems Cale seemed to be having before we talked about the hearing test he still needs.  And when she agreed to have him knocked out for it, my face lit up.  "Oh my God!" I thought to myself. 

I had to tried to convince Cale's last doctor that he needed to be knocked out for his hearing test last year, but he wouldn't prescribe it.  And since me and an entire team of audiologists couldn't get Cale to hold still for the testing, it was never completed.  I had forgotten that we still don't know if he can hear!  I had given up on this entirely, yet now this doctor was offering to have him knocked out for it!  Pull her hair again Cale!  Just kidding.

"Well," I said, "I could try to take him in and do the hearing test again the regular way.  Maybe this time if I gave him a sucker I could make him be quiet enough..."

We both stopped and looked down at Cale.

"Naa," she finally said, "Just have him knocked out for it," she said smiling.  God BLESS this woman.

Cale's teachers finally called a meeting to discuss Cale's behavior at school. I went in on Thursday and learned some valuable information. After we all compared battle wounds (the scratches and bruises my son has left on each of us and whose was worse), the teacher told me an earth moving piece of information.

She has an emotions board which is basically a pretty piece of cardboard. Velcro ed to this board are twenty-five pictures of little faces, each displaying a different facial expression for one of twenty-five different emotions.  These faces are scattered randomly throughout the board and are NOT grouped in emotions that go together.  So one has to be aware of which emotion each of the twenty-five cards represents in order to pick out an appropriate one. 

She showed this board with all the faces on it to Cale ONE time, trying to get him to pull off the "mad" face during one of his tantrums a few weeks ago. He didn't seem to get it so the board went by the way-side as I'm sure many of her classroom tools do in the midst of all the chaos.  Then it sat on the shelf for several weeks untouched.

Then one day last week, during one of his tantrums, Cale went and grabbed the board off the shelf, brought it to her, and pulled off five different faces from five different locations on the board.  The faces he pulled off were "mad," "frustrated," "don't like," "crying," and "afraid."  He handed them all to her and calmed down immediately.  Every teacher, therapist, and aide in the room got goose bumps when this happened.  They'd gone over these faces with him ONE time weeks ago!  Holy shit.

I knew that Cale was understanding more than he appeared to be, but I also really tend to think of him as a baby because that is the level at which he functions.  So I was struck with the oddest sensation as I walked to the car after the parent/teacher meeting.  "My baby is not a baby," I thought to myself, "and he's really smart.  And this time I'm not just saying that to make myself feel better.  There's really a four year old child in there with some sort of language barrier."

We're doing a lot of drastic things to help Cale now that we know more of what he understands.  The expectation level for him has gone up, but I'll have to go into this later because I'm about out of time for today. 

I finally talked to a friend of mine about the institutionalization train because the shaking and crying wouldn't stop.  Even the thought that this might be in the future somewhere is too much for me to tolerate, but she said to me that sometimes the thing that looks like the scariest thing in the whole wide world turns out to be the best thing that could happen for everyone.  And I believed.  I have to.  And then of course she said, "But you know, you're not anywhere near that right now."

I can't help but think that Cale's God is more real than mine.  Maybe Cale's God is in the leaves in the trees he always stares at, or in the details of the water he pours out of cups over and over again.  Maybe he's in all the REAL, "right here and right now" things that comfort Cale.  Maybe he's even in the things that don't comfort, but teach Cale.  Maybe Cale doesn't need the tooth fairy.  And maybe he won't need God or spirituality explained to him.  After all, he's proven that just because he can't say it doesn't mean that he doesn't understand.

The Non-Run Away Bunny

Every night when I put Cale to bed I cover him up with his puffy blanket and push the button on his singing toy.  Then I smile big into his face and with all of my might sing the words to the toy's wordless melody.  He's always stared long and hard at my mouth, watching my lips closely as if he's studying the sounds I'm making.  And before his fourth birthday, my heart broke in doing this.  I could never tell if he saw this a bonding experience or if he simply saw me as another one of his toys that makes music for him.

I remember the day I turned four years old.  I got a new blue dress, a Raggedy Ann doll that was as big as I was, and shiny black, patent leather shoes that I'd asked for for months with my rather large collection of spoken words. 

The shoes made the ground slippery under my feet.  Having had no experience with this, I ran full speed, holding my giant doll, through the garage with the intention of reaching the back yard.  The bottoms of my new shoes didn't make it two running steps across the polished concrete of the garage floor before slipping right out from under me.  My legs flew into the air, my dress tangled instantly around my ankles, and the back of my head hit the concrete with a thud.  I cried, hugged my mom, and learned all about not running with dress shoes on.  Still, it was the best day ever.  I fed Raggedy Ann chocolate cake, christening her with her first grubby kid touches, and then kissed her night night before falling asleep happy, full, and absolutely exhausted.

I've been waiting for Cale to turn four.  Not the kind of watching the clock waiting.  No.  The waiting for the universe to change it's course kind of waiting.  The 'not savoring the present moment because I'm waiting' kind of waiting.  The "I won't be okay until" kind.  The hopeless sort, the kind that keeps the soul stopped dead in it's very tracks.

I've always thought that four was the perfect age, the magic turning point, the switch from toddler to child.  And it was those things for Alden and Isabel.  Most of my own memories started at four years old, direct communication was in full swing, and potty training was but a distant memory.  I could go outside by myself, I knew to look both ways before crossing the street, and there was no need to scream anymore, ever, unless of course my head hit concrete.  But the single most important and most profound thing that happened for me by four years old, the thing I've been waiting for in Cale and that happened by four for both Alden and Isabel, was that I could tell the people in my life with my words that I loved them.

I thought about all this as I stood in the baby aisle at Target trying to decide what birthday present to get Cale.  I couldn't decide whether I should get him the push button spinning ball thingy that said 6mo. and up on it OR the baby gum ball machine full of brightly colored plastic "gum" balls that said 18mo. and up on it.  The latter required two steps (turn the knob and push the lever) to get the ball to come out.  My dilemma was that I knew he'd love the spinning ball thingy but felt he should have the more challenging toy, even if it would just piss him off in which case I'd have to listen to more screaming.  In the end I bought both baby toys, my expectations for Cale's fourth birthday shot out of the air like a bird mid-flight.

Cale just doesn't think the way regular people do.  It's not that he doesn't love me although that is what it looks like sometimes.  Usually when I try to play with Cale he gets upset.  This is generally because I don't understand the way he thinks.  When we're stacking cups, for example, he stacks three and if you add another it's incredibly disturbing to him.  I don't know this going in to the situation, it makes no sense to me what-so-ever, nor could I guess it ahead of time.  So when I add the fourth cup he screams, throws the cups at me, and walks away.  This is because he has no words with which to tell me what he's thinking.

At about the third activity I try to engage him in, with the result of him screaming and walking away, I become so upset that I can't try to play with him anymore.  So I put him in the bath tub where he calms instantly.  It comforts him a great deal to pour water out of a cup in a steady little stream, watching the details of it as it lands on the tub's edge and then trickles back down into the collective pool where he sits.  If I grab a cup and try to pour with him, he usually screams and turns his back to me and I end up feeling like he loves the water more than his mom.  But I keep pouring anyways.

What will he remember when he grows up?  He won't have memories of asking for shoes and running through the garage.  He won't have the delightful memories of pretending to feed dolls chocolate cake.  Will he remember the fourth cup?  Will he remember the screaming?  Will he remember the details of the pouring water?  And what will he do with that?

On the night of his fourth birthday after he'd smeared birthday cake on his face like a one year old, loved the 6mo. toy and hated the the 18mo. toy, and didn't seem to notice at all that it was special day for him, I put him to bed realizing that the magic four year old mark had completely lost it's memorable nature.  The sharpness of this snipped the last of the stitches in any remaining seams of my hope for Cale becoming "normal" some day.

I laid him down in his bed at bedtime, covered him up with his puffy blanket, and thought, "Maybe it's time to start reading to him more seriously, and not just Brown Bear, Brown Bear or something else of a repetitive nature.  Maybe an actual story.  Maybe four can mark the day he sat still for an entire story."  I was desperate for something.  Anything.

So instead of pushing the button on his singing toy, I grabbed the very first story book that happened to be laying on his floor amongst his toys and I began to read it.

He layed in his bed and watched my face closely.  The book I had grabbed was "The Runaway Bunny" by Margaret Wise Brown, and I had no idea it would hit me like a pound of concrete right between my eyes.  I was almost sobbing about the second sentence in.  It goes like this:

Once there was a little bunny who wanted to run away.  So he said to his mother, "I am running away."

"If you run away," said his mother, "I will run after you.  For you are my little bunny."

"If you run after me," said the little bunny, "I will become a fish in a trout stream and I will swim away from you."

"If you become a fish in a trout stream," said his mother, "I will become a fisherman and I will fish for you."

"If you become a fisherman," said the little bunny, "I will become a rock on the mountain, high above you."

"If you become a rock on the mountain high above me," said his mother, "I will be a mountain climber, and I will climb to where you are."

"If you become a mountain climber," said the little bunny, "I will be a crocus in a hidden garden."

"If you become a crocus in a hidden garden," said his mother, "I will be a gardener,  And I will find you."

"If you are a gardener and find me," said the little bunny, "I will be a bird and fly away from you."

"If you become a bird and fly away from me," said his mother, "I will be a tree that you come home to."

"If you become a tree," said the little bunny, "I will become a little sailboat, and I will sail away from you."

It was here that Cale put his hand on my arm.  I suddenly realized that my face was contorted and my eyes were soaking wet, so I tried to smile as I kept reading.  But, he put his hand on my arm again.  I stopped reading and looked at him.  He was staring into my eyes with a serious look, a confused crinkle right between his eyes. 

He continued to stare at me for a few moments with that serious look, his giant gray eyes not blinking one time.  Then he gently poked my eye and looked at the tear drop sitting on his finger before looking back at me again.  "Oh my God!" I thought.  Right then I realized that he wasn't running away.  He was right there.

Then he grabbed the book, threw it on the floor, and smiled big as he put my hand on his singing toy and began bouncing softly to the imaginary beat.  So I pushed the button and sang and he smiled his big baby smile and something about "normal" versus "not normal" shifted and became "who cares anyway."  Baby Cale gave me his own magic mark on his fourth birthday.  He let me know that I'm not a just a toy, and maybe even that he loved me.

the rest of chapter 2

My brother, and only sibling, is one and a half years younger than I am, isn't married, and openly admits never wanting children.  He has never been in a serious relationship.  We all thought he came close once, but this relationship involved a woman that blatantly took advantage of him.  She talked him into slowly giving her the thousands of dollars he'd saved over the years.  And once the money was gone, so was she.

I've often worried about him feeling lonely.  He lives alone in a room he rents in the attic of an old house.  He lives there because he's not sure if "they" are still trying to get him.  They may be.  It wouldn't surprise me.  And they may not be.  I really can't tell because I love him so much my blood vessels almost burst right out of my body when I look into his brown eyes - eyes that haven't hardened even slightly since he was four years old.  He feels safe on the top floor of that house and that's all that matters.

I sat next to him at the table wondering if he'd eaten anything yet that day as I watched him inhale a heaping plate of appetizers.  My mind had started in on it's incessant loop again.  With my chin in my hand, looking right at my brother, I once again started feeling sorry for myself that I had no experience what-so-ever with autism.

"Two of my kids are autistic," I said to him.

"Oh yeah?  Huh..." he said swallowing whole chunks of cheese ball and looking into my eyes.  Really wanting to know what that meant but not knowing how to ask, he continued with, "that's too bad."

"Yeah," I said looking back at him and not knowing how to sum autism up into one coherent definition, "too bad."

I got up, went into the living room, and sat down in the recliner next to the Christmas tree to watch my kids.  My grandmother was keeping them busy by having them sort each family member's presents into separate piles.  She used to have my brother and I do the same thing when we were little and I couldn't help but smile.  The few minutes it took to sort the presents on Christmas Eve. were some of the most exciting moments of the entire year when I was growing up.  These were the moments that built the delicious anticipation to new heights which would then be released into piles of baby dolls with real diapers, tinker toys, Star Wars action figures, and piles of sparkly paper all over the living room floor.

Isabel was really trying to help sort the presents, but she kept putting them into the wrong piles.  Alden would then quietly correct her by waiting until she wasn't looking and then putting them into the right piles.  I smiled even bigger as I thought about the fact that Alden and Isabel remind me in so many ways of how my brother and I used to be.

"Are we ready?!" Alden finally asked, "Is it time to open presents yet?!!!"

"Just a couple more minutes Alden," I said.

I looked down at the unwrapped box he was holding and the smile slid off my face.  It was one of the three that my brother had brought in and it was from the Build a Bear Workshop in the local mall.  My heart dropped two inches inside my chest while I allowed myself to envision what my brother may have gone through to get my kids these presents.

It got dark outside early that night.  And it was so cold.  The temperatures were stuck well below freezing while soft, fat snowflakes landed by the millions on the thick, dark ice that covered every square inch of each street.  The snow plow guys were surely in sweaters next to warm fires, enjoying turkey dinners and opening presents with their kids as the streets disappeared under the storm. 

Not knowing what kinds of toys my kids liked, what movies they were into, or what on Earth to get them for Christmas, he'd set out on a little journey to find something an hour or so before having to be at my grandmother's house for Christmas Eve.  His perception of how long things take a little off, but doing the best he could.

Not thinking of the fact that toys are much cheaper and easier to access at a place like Target, he had driven his sometimes working car with it's sometimes working heater through the snow and over the ice all the way out to the home of our childhood toy store - the local mall.  He parked and walked through the dark parking lot alone, not sure if it was safe or not, and went inside to where the old toy store used to be.

Upon realizing that our old toy store wasn't there anymore and not sure where else to go, he wandered around until he found the Build a Bear Workshop.  Seeing that they sold toys, he went in and picked out three different bears.  A brown one, a light tan one, and a dark sort of caramel colored one.  He then took them up to the counter to purchase them as they were.  Naked.  And a well-meaning sales person started in on him with complications.

The salesperson explained to him, in front of everyone else standing in the line, that you're supposed to put clothes on the bears.  She explained that you choose several items of clothing for each bear and dress them, giving each bear a distinct and flavorful personality to match the distinct and flavorful personality of the child the bear will belong to.  She let him know the cost per item and wanted him to make snap decisions about the bear clothing. The cost per item was not an even number and was hopeless to multiply by four items or so for each bear and then multiply that number by three, while everyone was standing there watching him, smirking impatiently, and wondering why he hadn't just gone to Target for three naked bears.

He didn't know what they were thinking so he was immediately overly embarrassed because, like so may times in his life, he'd missed something that everyone else seemed to get.  And not able to deal under pressure with complex directions and impatient people, he declined the sales person's offer of clothing.

"No thank you," he said, "I'll buy them like this."

Then she looked at him.  Maybe surprised, maybe disgusted, maybe even downright irritated, he didn't know.  But something.  He'd missed something.  Again.

After all that he was afraid to ask them to wrap the gifts and he left the store, glad he at least had something to bring my kids for Christmas.

I went back into the kitchen where he was finishing up his plate of appetizers and wanted to hug him.

"Build A Bear Workshop huh?" I said, looking at him.

"Yeah," he said, "they wanted me to put clothes on the bears."

"Well isn't that just silly," I said.

I still did not see it.  I really did not see it.  God had to put the puzzle pieces RIGHT in front of my face and then click them together with a snap.

Right then Isabel, who had just noticed that my brother was there, came into the kitchen.  She walked over to him in her stiff, clumsy way and held her arm straight out in front of her up towards him.  She waved her little hand.  Just her hand moved, nothing else, and she said, "Hi! Hi! Hi!"

He turned to face her in his stiff, clumsy way and held his arm straight out in front of him down towards her.  He waved his big hand.  Just his hand moved, nothing else, and he said, "Hi Isabel."

And I saw it.  I saw it softly and quietly, but it's weight was no lighter than a four ton boulder landing directly on my head.