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.