Tuesday, December 20, 2011

Christmas: Then & Now

It turns out I think I might have a favorite Christmas. It was when I was a little bit younger than Sharky is right now. I think I was eight. It was the year my father lost his job.

After about a decade of being a high school English teacher in Chicago, he'd been hired in 1969 by The Weekly Reader corporation in Middletown, CT to work for the magazine You & Your World, a publication for teenagers reading at a grade school level. He was extremely passionate for the work.

A few years into his tenure there, the company was bought by Xerox. Xerox stood to reap the benefits of many generous federal tax credits and shelters by owning and operating such an altruistic endeavor as You & Your World. Their first creative contribution to the operation was to install an entire level of middle management drones to scrutinize and dominate the daily goings on of the office. Given my father's fiery temperament, and his long-established resentment of all forms of bureaucratic hypocrisy and corporate tyranny, the stage was clearly set for conflict.

There were skirmishes over the years. There was the time when the company imposed a 15% increase on the price of the magazine, then braced for the possible fallout, in the form of cancelled subscriptions. When the cancellation rate was only 5%, thus ensuring the price hike would be profitable, there was much jubilation. An office party erupted. He refused to attend, instead staying in his office, working, and grieving over the fact that thousands of youth who benefited from his work no longer would, having been priced out of the market.

Not a team player. Not a good company man.

There were others. I can't remember them all now. But then there was the end saga. And for that, I'll include an excerpt from my mother's yet-to-be-but-we-hope-soon-to-be-published memoir of her life with my father, including her six years of caregiving for him before his death in 2009 at the hands of Lewy Body Dementia.

"In 1977 Chuck took a year’s social service leave from his writing job – with full pay and benefits – and worked at Long Lane, Connecticut’s only school for adjudicated youth. He established a school newspaper, 'The Nameless News,' so called because the teenagers could not legally be identified by their surnames. He worked to improve public relations with the Middletown community, whose citizens were often not happy about being the home of the state 'reform school.' Chuck counseled, taught, read his students’ thick files, and wept. “Long before they committed crimes,” he said, “crimes were committed against them.” He later said that this year was the best of his life.

He had a hard adjustment returning to his editing job and mentioned this fact in an interview that appeared in the New York Times. The publishing company (then owned by Xerox Corporation) didn’t like his attitude, and at any rate he had never been a “company man.” He was guaranteed one year of post-social service leave employment, and when that year ended, he was fired. Management’s explanation for letting him go was that Chuck had used the racist expression, 'eeny, meeny, miney, mo,' in an article he had written about television ratings, and that was unacceptable. If the firing hadn’t devastated him so much, their reasoning would have been laughable."

It would have been laughable not only because it's laughable, but because while the people who fired him were earning their MBAs, climbing the corporate ladder, and getting their time in at country clubs over the previous 20 years, he'd been dedicating his life to black and Latino youth as a teacher in inner city schools and as the editor of You & Your World. He'd been marching on Washington with Martin Luther King and joining in civil rights demonstrations in Chicago. He'd been getting sprayed with tear gas by police at the 1968 democratic convention in Chicago because he wanted to help bring about justice and equality and an end to the war that was bringing about the deaths of millions, most of them people of color.

But on the most hypocritical and absurd of pretenses, in 1979 my father, the sole bread winner of our household at the time, was out of work. His superiors told him to go home and wait by the phone while they decided his fate. They used those weeks to lobby upper management to support their decision, portraying their fabricated version of the events without giving him the opportunity to present his own.

They fired him. Ten years of dedicated service. Two weeks severance pay (he then appealed to the CEO of Xerox to save his job, and was instead granted an extra month severance pay). Medical benefits terminated immediately.

Naturally my parents did their best to shield me from the harsh realities of the situation. I had no clear conception at the time that I was an eight year old boy whose family had lost its source of income and its medical insurance. But we lived under the same roof. I sensed the stress and sadness. I felt his grief.

That year, in the weeks leading up to Christmas, my parents let us kids know that there would be some pretty significant limitations on presents, given the new financial world we found ourselves living in. But on Christmas day, I found under the tree a bounty of gifts. When we went through our ever-so-polite Christmas tradition of going around in a circle and each opening one present at a time, we found that the vast majority of gifts were things he had built for us. I wish I could remember more of what they were. I believe the end tables that brace the sides of my mother's bed to this day were part of it. For my brother Ben he built some wooden crates to house his collection of vinyl LPs.

And for me, a few wooden boxes custom designed to hold my collection of NFL trading cards. They even had little dividers and tabs to sort the cards by team, placed in alphabetical order (and in my mind's eye, envisioning these tabs, the team names were definitely written in my mother's handwriting, so I must point out that she too definitely had a hand in all these gifts). Last of all for my gift, somehow, magically and Santa-like, they had actually sorted all my football cards and placed them in proper order into the new boxes.

I can assure you this is not a case of me, as a child, thinking a present was lame and then later as an adult deciding it was meaningful because of some context I couldn't appreciate at the time. I cherished those rectangular wooden structures. When I was 17 and my parents made the move to Washington, we sold them off at a tag sale. I was completely unsentimental about this at the time. Now, a pang exists, wishing I'd kept them. But no, no reason. Such a thing becomes a burden when you lug it around with you everywhere. In letting go of the object itself, it becomes more meaningful.

So that was my favorite Christmas.

It turns out I actually have a least favorite Christmas too. That would be the Christmas I took my son to Children's Hospital. But then again, maybe it's not my least favorite Christmas. Maybe it was better than all the many, many Christmases which none of us can even remember because they were so mundane they weren't even worth remembering. Maybe I'll just be grateful for something to remember.

Like many children with autism, Sharky experienced an extreme fear of using the toilet. He was very late to be toilet trained. He refused to use the toilet. There were no issues with ability to comprehend when he needed to use the toilet, or with ability to control the "flow." In fact, it turned out to be quite the opposite. At age 5 Sharky was still in diapers. Every tactic had failed. And so his parents made an ill-fated decision to make this a battle of wills.

Don't ever have a battle of wills with a 5 year old child with Autism. You will lose. Everyone involved will lose.

We decided he would no longer wear diapers. It was time for this to stop. If anything was going to come out of him, it was going in the toilet. His response to this was to concede peeing, which he began to do in the toilet. However, the other matter was out of the question.

Estimates on how long this went on vary, and it's too bad we didn't keep a journal. Some say two months, others say two weeks. Looking back, my best guess is that it was approximately one month that he refused to allow himself a bowel movement. His mood deteriorated, his level of physical discomfort visibly increased.

And it all came to a head on Christmas day of 2006. We were over on Bainbridge Island at my mother's place. My siblings and niece and significant others were present. My father was home from his nursing home. Sharky did not voice complaints about his pain. But he showed little to no energy. He laid down a lot. Eventually, I laid down with him in the guest bedroom and put on a movie. We both laid there in bed, motionless, staring blankly at a screen, registering no response to what we were watching. We just waited for what would happen next.

Then Sharky, softly and without sound, wilted into a tiny ball. He crumpled up, unable to withstand the pain any more. His cheeks flushed. I got up and walked into the living room, where everyone else was gathered around the table eating Christmas dinner. I asked for their help in gathering our things and gifts together, because we needed to leave to go to Children's Hospital. Within minutes there were helpers carrying our things to the car while I carried Sharky, who was unable to walk.

I called his mothers to let them know what was happening. Without even the slightest hint of shock or surprise, they said they would meet us there. On the ferry ride to Seattle, I informed the ferry crew that I had a sick child on his way to the hospital, and they made arrangements for us to get off the boat first. They also summoned some paramedics who happened to be on the boat to come talk to me. The paramedics, while sympathetic, told me there was nothing they could do for us there, we'd just have to go to the hospital.

I carried Sharky up to the main deck of the ferry and found an out-of-the-way spot for us to sit. I sat in a chair with him draped across my lap in the fetal position. I recall being stricken by his lack of emotion. There was no crying, no whimpering, no fear, no pleas for help. He was as calm and placid as a little baby buddha. I saw this as resignation. It was as if he had accepted this as his fate. Life was a short and bitter battle in which you either release your innards into some horribly scary, vacuous hole, or you bottle it all up inside, crumple up in pain, explode, and die. So it goes. I feel like I have excellent insight into the mind of Sharky, and I am quite sure that on that night he had decided it was his time to die. And while he was not happy about it, he was accepting it.

At the hospital, they took x-rays of his rectum. We learned that he had held in his poop for so long that the rectum was now dilated, impacted. Even if he changed his mind and decided he wanted to have a bowel movement, he couldn't at this point. The only solution was an enema. Me, his moms, and the doctor worked together to pin him face down to the hospital bed and shove a tube up his ass. The screams that emanated from him while we did this will haunt me until I die, and perhaps after that as well.

I hate... hate, to even bring up terms like this. But it felt like a form or rape. We were violating him. Sure, maybe it was for his own good. But it was a violation nonetheless. And he let us know about it.

And it didn't work. So after waiting an hour we did it again. And after waiting another hour we did it again. And after waiting another hour we did it again. And after waiting another hour they sent us home with instructions to do it again over the next few days.

I took Sharky home that night around midnight after six hours at the hospital. We stopped at the Bartell Drugs, open 24/7/365, across the street from my apartment. I still wonder what the cashier thought as Sharky and I approached his register, looking beyond haggard, Sharky still wearing his hospital bracelet, and us purchasing a bottle of apple juice, a home enema kit, and a 1.5 liter bottle of cheap white wine.

Over the next three days, I spent my lunch breaks from work driving over to the moms' place so me and one mom could pin him face down to the bed while the other mom squirted oil up a tube into his rectum. The screams never diminished. Good for him. He had all the right in the world to protest.

Eventually the dam broke. A couple of months later, he had massive dental surgery to repair all the abscesses and cavities he'd developed out of a terror over brushing his teeth. Ever try to forcibly brush another person's teeth? It doesn't work. You can try for three hours locked in a bathroom. It just doesn't work.

Oddly enough, once the concrete block was removed from his rectum and the bleeding abscesses were removed from his mouth, everything changed. A couple of weeks after the enema onslaught, Sharky's moms, Paul Nyhan of the Seattle Post-Intelligencer (working on an article about us), and a counselor from Seattle Children's Home were all gathered at my apartment. We were laying out a behavioral support plan to deal with Sharky's explosive temper tantrums and aggressive behavior. In the middle of the meeting... I'm just going to put this bluntly... Sharky walked over to his potty chair and took a big old shit.

It was kind of nice that in addition to the cheers of me and his moms, we also had the excitement of a behavioral specialist and a member of the press on hand to voice their approval.

And so the boy who got kicked out of preschool because he was beating on other kids became the boy the teachers say is one of their best behaved, the sweetheart, the "angel," the "doll." Funny how we can change when we're not in excruciating pain.

He's now the sweetest kid ever, but the developmental delays are still there. But these "delays" have their benefits as well.

In the book, Pscyhotherapy East And West, author Swami Ajaya breaks down various paradigms of consciousness. He explains that at birth, we all see the world through the monistic paradigm, in which everything is one. As we are raised, we are taught about opposites, the difference between things. We learn about polarities. We learn about happy vs. unhappy, healthy vs. sick, loved vs. hated, smart vs. stupid, good vs. bad. From this teaching, we come to accept the reductionist paradigm, in which we break things down into separate components. Instead of perceiving things as being one, we sort them out into different, and usually opposing elements. When we perceive everything to be in opposition to one another, naturally conflict ensues. This way of thought is divisive by nature, and it's how most of us think. Through years of devotional meditation, some can escape this reductionist way of thinking, We might call them sages, or buddhas, or saints.

Sharky and his "delays" may have provided him (and me) with a short cut. He is now 9, and shows no signs of having any intention of comprehending the reductionist way of life. He will approach me and say things like, "Hey dad, do you know what my favorite color is? Red, blue, green, and black." When people ask him silly questions like, "Who do you like better, superman or batman?" his response is always "superman and batman."

This boy experienced an enormous range of happy and sad, pain and pleasure, love and hatred, good and bad by the age of 5. He experienced more of it than most of us experience in a lifetime, before he'd developed the whole reductionist way of thinking. Everything has remained one.

Everything is one. Here's hoping that Sharky doesn't have to endure that awkward stage between newly born sage and old man on a mountain with a long beard sage. Let's just hope his life is straight up sage. It will be hard. There's a line of adults out there wanting to teach him the wrong way of thinking. Sometimes I'm even in that line.

Which brings us to his current state of Christmas. Sharky will indeed, when pressed, tell me what presents he wants for Christmas. He's even figured out that this time of the year is a good time to hit adults up for things. But he's not really that enamored with the whole thing. He has a hard time understanding why this day should be any different from any other day.

And he has a hard time getting this whole Santa thing. Most parents have to deal with the issue of whether or not to lie to to their children and tell them there's such a thing as Santa, and then later how to tell them that they lied to them about Santa. The whole issue never came up with Sharky. Does Santa exist? Of course he exists. People talk about him all the time. They depict him in movies and books and commercials all the time. We think about him. All of that's a form of existence. Sharky has never demanded to know whether or not Santa is "real." Everything is real.

But for most kids, there's some concrete form of existence - a fat guy in red and white jammies with a beard slides down my chimney and leaves me presents and eats the cookies and milk I left him... therefore he exists. When it turns out that very specific story isn't true, that means he doesn't exist anymore.

Existence vs. non-existence. The dualistic paradigm.

In Sharky's world, Santa exists. Sharky's happiness and perception of reality in no way hinges upon him. Santa's a beautiful person and a wonderful story living amongst an entire universe of unlimited beauty, which occasionally dispenses a gift into our laps. No need for any arguments. It's all so simple. Why all the hub-ub?

Everything that exists is one: The monisitc paradigm.

Merry Christmas everyone.

Monday, December 19, 2011

Le Mixeur Sharky: Nine Stories

(note: this post was written for the blog Le Mixeur, and re-posted here).

It's been over two years since we held a Le Mixeur. And it's been almost that long since I wrote a blog post. That is not a coincidence. This blog was created for the purpose of disseminating information about Le Mixeurs, and continued to be driven by Le Mixeurs over the years. Once the Le Mixeurs dried up, so did the blog.

Time for the comeback.

As many of you may know, my life revolves not around booze or Mixeurs, but around a nine year old boy named Sharky who I am lucky enough to consider my son. As some of you may know, Sharky was diagnosed with Autism about five years ago. And as far fewer of you may know, last August Sharky's insurance company declared that he was no longer eligible for speech therapy coverage. This came on the heels of his insurance company declaring the previous year that he was no longer eligible for physical or occupational therapy. That came on the heels of the state department of social and health services also saying he was not eligible for coverage of speech or physical or occupational therapy. That came on the heels of him never being eligible to receive applied behavioral therapy, or sensory integration therapy, or anything that might actually help him.

Of course, all of that's no big deal. Me and his two mothers raised him without their help. And now he's nine and in my opinion the best person this world ever produced. He's the most amazing person I have ever met. This world, which hasn't offered him much except all the good people in his life, is beyond fortunate for his existence. Every day he is here, he makes the world a better place.

But he does need help. We need help. We need your help. He has the most beautiful way of expressing himself, and many of you have witnessed this through my ad nauseum posts on facebook quoting him. But learning how to express himself more clearly through speech therapy will not only increase his chances of surviving in society as an adult, but will also make him happier in his relationships with the people he meets in life. He won't always need his dad to interpret what he says.

So we're going to throw a Le Mixeur Sharky to raise money to pay for those damn pesky $150/hour speech therapy sessions. And we're going to base this Le Mixeur on the works of J.D. Salinger, who wrote so beautifully on the dreams, ambitions, and qualities of children. He wrote so beautifully, and was appreciated so widely, that it's hard to believe we have still managed to conjure up a world in which the help children need is denied, and in which a child dies of starvation somewhere in the world every three seconds. I think of that fact often, and it never fails to remind me of how unbelievably fortunate I am.

Le Mixeur Sharky: Nine Stories, will feature a menu of nine drinks, each based on one of Salinger's stories from the collection Nine Stories. Each of these drinks will be original creations by some of my favorite Seattle bartenders. Each of these bartenders will be assigned a story. They have the options of a) basing their drink strictly on the title b) basing their drink on the summary and notes I provide them, or c) reading the story and basing the drink on that.

We will hold Le Mixeur Sharky: Nine Stories sometime in March. Details and specific date are yet to be determined. I will be putting up blog posts on each drink for the menu as they come in, with descriptions of the drink, the story, and the bartender.

I will be posting the updates on Le Mixeur Sharky: Nine Stories, here and on the blog I once kept about Sharky. It was a blog that briefly garnered a following and, on one occasion with the assistance of my brother Ben, got over 10,000 hits in one day for this post.

I'd like to officially commence this journey by thanking all of you who have been supportive of Sharky and I over the years, no matter the level. The next few months are going to be emotional and meaningful to me because of this project.

OK. Let's do this.