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September 23, 2011

Uncle Bob

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Uncle Bob is convinced he is a Native American. It doesn’t matter he is of pure European ancestry. Or that he lacks hair, eyes or skin tone that could possibly fool you. He is a self-proclaimed member of the Cherokee Nation. It is unknown if the Cherokee know him, though he sends letters and pictures to random tribes. For instance, a snapshot of himself on a horse he’d borrowed from a hooker turned horse breeder. Bob is not a stay put. He wanders through towns and cities. Rides upon female handled Harleys.
Aside from his booming voice, impulsive theatrics and random paranoia, Bob is easy going. He has obsessions. Bathing isn’t one of them. The closest he comes to clean is a sink and air dryer at Denny’s. Not that it matters. Well, at least much to most people.

Bob isn’t hard to spot. It’s hard to ignore a white man with face paint wearing a buckskin coat draped over his shoulder like a flag. Bob finds refuge in Coffee Shops. And family owned Diners. He likes IHOP, a place he play cards and salutes retired military men. He is known to hum the Pledge of Allegiance. TV commercials drive him up a wall. He loves Rita Hayward. Bob has up days—cheerful, loquacious ready for anything. Down days, when estranged from meds, you can see the change. Hair drops south. Eyes pop north. People become perpetrators. He sits alone, smoking and rambling.

He lights cigarettes and holds them like a candle. When he speaks, it’s with mixed tones and emotions. “Rat bastards,” he’ll say in reference to US Government--the same government that has, for years, faithfully sent him a monthly SSI check. Budget cuts to SSI spark near homicidal fits. “I’m gonna cut off heads,” he’ll mumble. It is always unclear whose head he wants to cut. Though, I recall there was a brief period when he despised Pete Wilson.

My most vivid memories of Bob are at family functions, where cousins sat mumbling and sneering from a corner as he would crunch chips and vilify our government. He can be compulsive. One Sunday at an all-you-can eat Buffet; he ate 19 pieces of bacon, 5 omelets, 22 strawberries, 5 muffins and 7 slabs of salmon. I have an idea of amount, because he squirted it in ketchup on the table. Strangers stared. I glared back. Crazy or not, he is still my Uncle. This was no circus show. Damn it.

Nobody in the family ever named Bob’s illness. When I was around 10, I had a dream. Uncle Bob stood alone in a driveway—wolves harassing him with hit and run bites, bent on tearing him to pieces. I didn’t understand the dream then. It always bothered me.

My grandmother often pretended she didn’t know Bob. And when she got Alzheimer’s it became easier.  It must have been hard to know a son when he stood in the driveway banging trash cans at two in the morning. Or belting out improvised songs, “He blew his mind out in a cloud…the English Army couldn’t come right now.” At the mall, security guards often hustled him out of stores, my grandmother avoiding eye-contact. He wouldn’t leave until they gave him a cigarette. “C’mon amigo,” he’d plea. “Peace brother.” Even when disturbing the peace, he tried to be a peacemaker.

I guess you know by now, Bob has Schizophrenia. Or rather, schizophrenia has Bob. My grandmother says he caught the “disease” in the early 70’s, while living in San Francisco, “eating mushrooms” with “hippies.” Bob used to disappear for months, but was no drug addict. He is, however, a person who arrives on scene and gets swept into the sea of people around him. His appearance, like a nest of baby birds, is never permanent. He is not an idiot. He knows every family member’s number. He calls. Collect.

Bob once appeared at a family re-union with a recovering alcoholic named Goldie. Goldie was a petite woman who had few locks and fewer teeth. Bob and Goldie lived in a car behind my great-aunt’s bakery, until Bob, after drinking 10 cups of coffee, took a baking pan and bounced it off my uncle’s head. An acute dopamine overload into an already dopamine-dysfunctional brain, I assume.

I once saw Bob hitchhiking down Highway 180. I felt myself wavering. Should I cross the center divide and get him? It was 1987. I was on my way to a college. Goldie wasn’t with him.  She would appear later with a brass-knuckle toting teen who claimed to be the offspring of Billy Jack.  Or maybe it was Jack La Layne. The kid was half black.

Bob is not a violent man. Though, he did once beat Goldie’s ex-husband. He didn’t consider the man confined to a wheelchair, enough earthly karma. In response to why he beat the aging paraplegic, “Was for the years he punched and kicked Goldie,” he said. And that was that.

Things you say to Bob are subject to distortion. Like in the fall of 1982, when my grandmother casually told Bob the high school bus transporting me back from a soccer game, broke down and we were stranded in the “ghetto.” “Kimmi’s been kidnapped and raped!” was the last thing he shouted to an unknown audience. Attempts to re-dial and clarify failed. In my uncle’s mind, all he saw was a psychopath ready to pounce because, “the world is filled with nuts.”  Bob lived north, 8-hours away. Six hours south later, Bob skidded into our driveway; brandishing a Samurai Sword he called Tanto. I’d been safe at home, asleep— for hours. “Kimmi’s fine,” my parents assured him. He could not be assured. He slept in his car near our front gate— just in case. Later, after he washed and groomed in our dough boy pool, I spotted him running naked through the apple orchard, simulating a fight. “Let’s go Mother F@@@@@!!!!” He was swinging a chain.

That summer, Goldie left Bob for an older woman. I believe the woman was her sponsor. The next day, Bob drove his old Buick through the front door of a Jack N’ the Box. A man can only take so much. They’d forgotten his fries.

It didn’t surprise me that Bob was difficult. I had seen him toss Haldol and Mellaril out the window of my grandfather’s Pontiac. Social workers have tried to find him a group home. Sometimes, he’ll stay a year. And then, as is common in homes for mentally-ill, he’ll be given a 30-day notice, as if a non-paying tenant. There is never a back up plan.

Apparently, some compassionate conservatives and democrats promote releasing mentally ill, against all odds, into savage streets, to dwell, without proper care, like sound men and women. Mentally-ill are easy to treat if you don’t treat them, and they’re reduced to living in boxes and dumpsters.

San Francisco. 1999. After a large rodent bit Bob’s buttocks down on Turk and Eddy, Bob hitchhiked to a ranch in Sonoma, where he forgot he was an Indian and became a Mexican.

For months, he floated through flea markets where vendors hawked goods in Guatemalan accents. “OLA Migos!” he’d shout, cowboy hat hanging low on his head. He’d trade cigarettes for tacos.

Bob likes to barter. He is not a business man. He once traded a Stetson for an army blanket. Then, a Swiss Army Knife, for a pack of smokes that became a pack of gum that turned into a stick he gave to a girl at a soup kitchen.

It’s fair to note, however, Bob did reflect and regret his losses. Upon trading a sword for a spoon, he spray painted a telephone booth with a peace sign and, at a 7-11, punched a bag of Doritos. He likes sugar. A woman he once met drove him 45-minutes to buy him maple bars, crumb donuts and a gallon of milk.  The drive back, she told us, was a feeding frenzy. There were sirens. Bob had an astonishing aptitude for acting. As the sheriff approached, Bob feigned a heart attack. He had, after all, a prescription of nitroglycerin. He tossed the woman the bottle. “Give me a pill,” he puffed and placed it under his tongue. Turning to sheriff, “Thank God my wife found a place we could pull over.” Funny thing is, Bob may have had a real heart attack had the cop given her a ticket.

I have long lost touch with Uncle Bob. Last I heard, he was in a group home near Fresno and had been arrested for streaking. There’s something about schizophrenia that makes clothes fall off. He claimed he was running from cougars. Upon being detained, he had asked cops for a cigarette. They gave him cuffs. He asked for a steak. He got pepper sprayed. He asked to use the toilet. He was shoved into a cop car. He urinated on a rookie. Was soon deemed a 5150. For 72 hours, every 8 hours, nurses hit him with Haldol and Klonipin. Somehow, he got into the computer and changed his medications. Haldol became Halfprin. Klonipin became Kaopectate.

Over the years, he has lost almost all his teeth. Medi-cal doesn’t cover his dental care. He must eat soft foods. He’s been kicked out of every Soup Plantation. It’s difficult to run a business when a man with no shirt and one shoe screams the F word while slurping bowels of Clam Chowder.

It is said he spends hours at the Public Library. For reasons unclear, he is studying toxoplasmosis (an infection caused by a parasitic one-celled protozoan). He is also seen standing in public parks, eye-balling with suspicion every biker, walker and jogger. On rainy days, he walks the streets, searching for spare change. He has been seen assaulting ATM’s.

He ignores newspapers and refuses to watch news. “Lies, lies and more lies,” he says. One wonders if it takes a schizophrenic mind to see reality. It’s unclear whether or not Bob will ever find the reality he needs or if wolves are still surrounding him. He’s around 60 now. What is known is he is still in one piece. And his life has touched others. 

Growing up around Uncle Bob may have prepared me for loving, unconditionally, my future severely-autistic son. Just as my son’s life is now preparing others to love and accept the Uncle Bob’s of the world.  

I've been told my autistic son is a curse. I'm sure my grandmother was told the same regarding my uncle. But that is a lie. Remember the scripture where the disciples thought a blind man born to parents was the result of punishment? Recall what Jesus said:

John 9:2-7: "And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him...."

Kim Oakley

September 2, 2011

Anti-Psychotics and Gastrointestinal Issues in Autism

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Gastrointestinal Issues in Autism fueling Aberrant Behaviors?

So a recent CT scan of abdomen (8/30/11) done on my autistic son shows: “mild edema of mesentery” and “trace fluid right paracolic gutter.”

First, let be me clear that I was NOT told this result by doctor. I had to get RN to pull up results on computer screen and copy results by hand on a writing tablet I keep in my purse for times as this. You see, I’ve learned from years of disappointment and misinformation regarding my son’s evaluations that you can’t be sure you are being told the whole truth about test results. I’m not sure why that is. Perhaps it’s because, as the doctor later told me when I asked him about result, said, “it’s nothing…it’s a non-specific finding.”

I don’t know about you, but when you have an autistic child who has severe, chronic, episodic issues like self-injurious behaviors, every finding is specific and warrants scrutiny, as it could be affecting health.

Funny thing is, when I later did a Google search of “mild edema of mesentery” and “fluid in paracolic gutter” it doesn’t appear this is a non-specific finding. In fact, it appears such a presentation warrants further investigation. But alas, I’m just a mother of an autistic son and when doctors hear I “Google” something related to my son’s health, it’s as if I’m some hyper-vigilant mom desperate for answers (like what mother of an autistic child isn’t?) and I’m given a sympathetic smile and warned, “not to trust everything you see on the Internet”-- though I know doctors use the Internet to research complex medical issues.

Aside from this latest finding, let me bring up the topic of downplaying and minimizing our autistic children’s medical needs. For instance, last week my son was hospitalized for dehydration. The dehydration is directly related to his chronic deterioration of appetite and drinking since his first administration of anti-psychotics, mainly Risperdal. Risperdal caused tongue tremor and paralysis. Despite being given Cogentin, these EPS (extra-pyramidal symptoms) have never since been completely reversed back to his baseline. Despite this fact, the discharge papers said my son’s diagnosis was “dehydration” and “acne”. ACNE. For the love of God, can you imagine? I got 4 pages of acne information. I received NOTHING about chronic adverse side effects of anti-psychotics that have left my son with over 5 months of slowly declining eating behavior and loss of weight, post Risperdal, Abilify and Zyprexa. Research shows risperdal is probable main culprit of tongue paralysis, dysphasia and tongue tremors, by the way---which leads, of course to dehydration, given the person can’t eat or drink properly when your tongue isn’t properly functioning.

I refused to sign discharge papers until “rule out anti-psychotic induced dystonias” was duly noted. It took me hours to get doctors to believe the connection, the entire time, them trying to ping-pong me back to neurology and psychiatry to make the connection. I finally had to articulate timeline of when he first received anti-psychotics and how since anti-psychotics, there has been a steady decline in his eating habits. One doctor blamed my son’s lack of eating on “his severe autism.” Another tried to blame it on the “heat.”

Suffice it to say, it is mentally exhausting to have to constantly advocate reality. I’m tired. Tired of hearing, “your son is just so complex…we’ve never seen anything like this.” Well, he is complex, I’ll admit that, but not so complex that simple signs and symptoms should be ignored. And let’s face it, life is complex. That doesn’t mean you give up. The more complex, the more you have to think outside the box to make things better. I don’t see that happening with severely autistic children and adults, as if too many people don’t think they’re worth the time, effort, testing or treatment.

It’s heartbreaking to think how many autistic persons given anti-psychotic drugs are suffering from acute, chronic residual side effects which are largely undiagnosed due to groupthink hyper focus on “their autism” and other secondary irrelevant issues, such as acne, instead of the real issues at hand. The fact doctors don’t often consider underlying, undetected fueling etiologies behind WHY an autistic person would first present with a new sign and symptom like dehydration (especially when they normally eat and drink normally) is disturbing.

Maybe doctors don’t like blaming drugs manufactured by companies (Abbott and Johnson and Johnson?) that provide a lot of the perks they receive. Or maybe it’s just burn-out. I’m often told, no I take that back, I’m ALWAYS told when I ask doctors and RN’s to elaborate on my son’s condition while he’s in the hospital, “I don’t know..I just got on shift…I have other patients..” I’m not exaggerating. They always say this. And when I ask for test results, nobody ever knows. And one doctor even argued with me a test wasn’t done. It was. He later found it.

Anyways, back to adverse side effects of anti-psychotics: it seems like some doctors and too many RN’s are not trained to identify signs and symptoms of anti-psychotic drug induced dystonias, including tongue tremors, retrocollis, torticollis, tongue edema, throat tremors/ paralysis, oromandibular dystonia, Oculogyric Crisis, etc….My question is WHY? Elderly patients on anti-psychotics are also at risk. I mean wake up! These are potentially life-threatening, health-damaging side effects. You’d think emergency medical doctors and nurses would be trained in identifying these signs and symptoms, especially in developmentally-disabled populations, given they are often prescribed anti-psychotic medications for behaviors. Furthermore, I find it reckless and idiotic—a sign of low-level critical thinking skills-- to blame every new sign and symptom on a person’s “severe autism.” Outside of the “severe autism”, these are individuals, with delicate needs and concerns that warrant the same, if not higher standard of care beyond normal not at so high risk populations. Damn it, I’m just beyond tired right now. Numb. Waiting to hear back now from psychiatrist to see if there is an antidote or treatment to long term anti-psychotic induced dysphasia, tongue edema, etc…that is causing this chronic episodic not eating leading to dehydration, which if it continues, and he keeps losing weight, could lead to a GTube. And yes, anti-psychotics were discontinued about two months ago. He also had Cogentin and Benadryl for the acute symptoms, but tongue function never completely restored since getting Risperdal.

No doubt I need to find natural healing to help him gain BACK control of his tongue. I can’t believe one site suggested injecting Botox in the throat to restore tongue paralysis? Is that crazy or what? You use a paralyzing agent to restore paralysis? I don’t get it. And then it says, oh, by the way, the person may need to be tube fed for a few weeks, if Botox paralyzes the throat! No thank you.  It’s 2011, with billions assigned to AUTISM RESEARCH and TREATMENTS can’t we do better?