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.
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