Le Mixeur Sharky: Nine Stories. Numéro Un D'image

Well, what do you know. A Le Mixeur Post with almost no words. Just an image. One of many to come. They say a picture's worth a thousand words. The actual number of words a picture is worth actually varies depending on the country and the current exchange rates, and given the troubled US economy these days, you'd have to think that...

Shhhhh. No more words. Images only please. Everything is getting very hush.

(editor's note: more words to come soon.)

Le Mixeur Sharky - Your Date, Your Location, Your Drinksmiths

(This is one in a series of posts regarding Le Mixeur Sharky: Nine Stories, an upcoming fundraising event to benefit my son Sharky, who is diagnosed with autism and is no longer receiving any state benefits or medical insurance coverage for speech, physical, or occupational therapies. The event will feature a menu of nine drinks, each created by a Seattle bartender especially for this event, and each based on one of J.D. Salinger's 'Nine Stories.')

Dear ones, we have a date. You and we. A date. That date is, March 11th, 2012. This is the date we will hold Le Mixeur Sharky. What time? Ohhh, probably about 5 or 6. We'll let you know for sure soon.

Dear ones, we have a place. You and we. A place. That place is, Inner Chapters Bookstore & Cafe. Where's that? It's on 419 Fairview Ave. N, in the lovely South Lake Union neighborhood of Seattle. ICB&C offers just the appropriate blend of literary atmosphere, running water, and service areas to hold such an event as this. We are grateful to them for the use of the space and excited to collaborate.

Many details are yet to be determined. But what has been determined is this: nine of Seattle's finest bartenders are currently working diligently (right kids? diligently? yeah? did you get my last email?) on original drink recipes for the menu, each based on one of Salinger's stories. In the coming weeks, I'll be profiling each of these bartenders and their current place of work, a la Left Coast Libations. For the moment, here is a list, including their assigned story and place(s) of work.

A Perfect Day For Bananafish – Bryn Lumsden: Rob Roy

Uncle Wiggily In Connecticut – Marley Tomic Beard: The Sexton

Just Before The War With The Eskimos – Kevin Langmack: Knee High Stocking Co, Vessel

The Laughing Man – Nathan Weber: Canon, Rob Roy

Down At The Dinghy – Evan Martin: Ba Bar

For Esmé – With Love And Squalor – Ben Perri: Zig Zag Café

Pretty Mouth And Green My Eyes – Sidonie Rodman: Rabbit Hole

De Daumier-Smith's Blue Period – Philip Thompson: The Coterie Room

Teddy – Anu Apte: Rob Roy

Those savvy among you might note that, with the exception of Anu Apte (my collaborator and instigator of this event, and the only person I could trust with the creation of my namesake cocktail), none of these bartenders were in Left Coast Libations. This was deliberate. It's part of an effort to continue to promote the work of more and more talented bartenders. And had J.D. Salinger compiled a book of eighteen stories, it still would have been too few to include all the worthy bartenders in our fair and currently snow-covered city of Seattle. Which is my way of apologizing to all the other amazing bartenders here who aren't on the list above.

In the time between now and March 11th, I will in all likelihood make several clumsy attempts to explain why this event has to be, and why it has to be the way it will be, and what's been in my heart as I slapped together its concept and design. For today, I will do this by including the words of Eudora Welty, who reviewed 'Nine Stories' for the New York Times. In some slightly abstract and perhaps obtuse way, I feel that what she wrote expresses why Sharky and J.D. Salinger had to meet, how much this event means to me, and what gratitude I hold for the bartenders above, and to all those who eventually join us along the way.

Without further adieu...

Threads Of Innocence

April 5, 1953

by Eudora Welty

J.D. Salinger's writing is original, first rate, serious and beautiful. Here are nine of his stories, and one further reason that they are so interesting, and so powerful seen all together, is that they are paradoxes.From the outside, they are often very funny: inside, they are about heartbreak, and convey it; they can do this because they are pure...

The stories concern children a good deal of the time, but they are God's children. Mr. Salinger's work deals with innocence, and starts with innocence: from there it can penetrate a full range of relationships, follow the spirit's private adventure, inquire into grave problems gravely--into life and death and human vulnerability and into the occasional mystical experience where age does not, after a point, any longer apply...

Death, war, the flaws in human relationships, the crazy inability to make plain to others what is most transparent and plain to ourselves and nearest our hearts; the lack or loss of a way to offer our passionate feeling belief, in their full generosity; the ruthless cruelty of conventional social judgements and behavior; the persistent longing--reaching sometimes to fantasy-- to return to some state of purity and grace; these subjects lie somewhere near the core of J. D. Salinger's work.

They all pertain to the lack of something in the world, and it might he said that what Mr. Salinger has written about so far is the absence of love. Owing to that absence comes the spoilation of innocence, or else the triumph in death of innocence over the outrage and corruption that lie in wait for it.

What this reader loves about Mr. Salinger's stories is that they honor what is unique and precious in each person on earth. Their author has the courage--it is more like the earned right and privilege--to experiment at the risk of not being understood. Best of all, he has a loving heart.

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.

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.

A Loose End Before The New Year

A while back, I received a note via the comments section of this blog, from a parent in Seattle with an autistic child, who expressed interest in being in touch. I'd love to be in touch, but you didn't leave me any means to get a hold of you! If this parent, or anyone else, would like to communicate with me away from the bright lights of the blog, please feel free to email me at slwshark at gmail dot com.


Sharky and I just spent a fun. cozy week snowed in together at my house. All rules and structure eroded to nothing by the 4th day. Bed time got later and later until it became virtually an optional occurrence, precious little homework was done, grooming and hygiene routines became spotty to say the least, and I began joking with friends that we were well on our way to recreating Lord of the Flies. Finally, on the 7th day, we strapped into my car, took some deep breaths, and skirted across town on the unplowed roads of Seattle in order to reunite him with his mothers, who would soon be taking him to the airport for a holiday trip to Disneyland.

I just got word that Sharky has arrived safely in Los Angeles, a mere sixteen hours after his plane left Seattle. Apparently they were scheduled to land in Salt Lake City for a short layover before proceeding to LA. But Salt Lake was snowed in, and the plane was re-routed to Boise. After several hours sitting on the plane in Boise, they got word Salt Lake City was back in business, but oops, they can't find the fuel truck and they need to gas up. They eventually found the fuel truck, but oops, now the plane has a broken part...a part that had been broken since they left Seattle! Lovely. Eventually they flew to Salt Lake City, where they spent the night on the floor of the airport, before finally getting a connecting flight to LA.

This is undoubtedly a cheap shot, but I can't help but wonder if Delta Airlines is managed by the Seattle public school district.

Oh yeah, that was a cheap shot. It felt pretty cheap.

At any rate, Sharky apparently was very successful in entertaining the other children stranded on the plane, and slept comfortably on the floor of the Salt Lake City airport. And now is prepared for his first pilgrimage to Disneyland. Quite an eventful first ever airplane trip.

Airplane odysseys and adventures to Disneyland: more things we never would have dared even try a couple of years ago. Now, as my mother wrote me in an email last night: "Sharky will probably do better than anyone else in that he has few expectations and can make the best of what is happening. A lesson for all of us."

Good Things

The past months have been good for us. With Sharky's placement at Bagley secure (and I do promise to one day complete the telling of that tale), we've had no need to deal with the school district. Whereas in the past they always insisted on having a district representative present at our IEP meetings, our last one in November was just parents, teachers, principal, and therapists. No one ever even mentioned asking the district to be there.

Dealings with Sharky's classroom staff have always been positive. They have all, in our case, had Sharky's best interest at heart, and all have worked within the limitations of the system to provide everything they can. There often seems to be an unspoken understanding amongst us all that the district is insane, and we are sharing in our toil under their reign. And many of them clearly have been rooting for us in our battles with the district, believing change will only come from the actions of the parents, not from the faculty.

Also, as the child of public school teachers, and as a former special education paraeducator myself, I hold a deep affinity and empathy for those who choose this path. It is hard, hard work, with mounds of expectations placed upon you by multiple parties - expectations which are invariably conflicting with one another, and impossible to meet with the resources provided. When my father advocated for his students, he automatically found himself in direct conflict with the administration. Teachers who cow to the administration run the risk of becoming disconnected from their students, and drawing the ire of the parents.

And it's no secret teachers and paraeducators are not adequately compensated, when considering both the workload and the importance of the positions. Sharky is currently in a Montessori program, which we worked very hard to get him into. In the 1960s, my father was president of the Illinois Montessori Association, and sent my two oldest siblings to a Montessori elementary. Of course, his teacher's salary was not enough to pay the tuition of one child, let alone two. So he took a job as a janitor at the Montessori school, which merited him free tuition for his children. And so a veteran high school English teacher and President of the state Montessori Association spent his evenings cleaning toilets and mopping floors of the Montessori school.

When I worked as a paraeducator from 2002-2004, my hourly wage was $12.07/hour. Not too bad a rate for Olympia, WA, until you consider it was a contract for six hours per day, 189 days per year. That comes to an annual salary of $13,687. despite the fact that the school year only lasts nine months of the year, the salary is prorated over 12 months. This works out to $1140/month. The district makes no contribution towards health care premiums for dependent children, and Sharky was covered on my plan. After that premium, taxes, and union dues, my take home pay was $740/month. That's less than $9000/year.

The idea, I suppose, is that while collecting a paycheck in the summer, you still have time to work another full time job, doubling your pay and storing up cash to last the winter. However, what summer jobs are out there that really pay so much as to make this scenario a reality? I worked the summer of 2003 at an inpatient drug rehab clinic for adolescents. It paid $10/hour. I also worked fill-in shifts for an agency providing home support to adults with disabilities, and made $8.65/hour. When the school year started, I hadn't saved any money, and had to keep all three jobs. I'd get up at 6am, be at the school by 7:30, work until 2:30, drive to the rehab clinic, work there from 3:00 to 11:30. I'd get home at midnight, go to bed, wake up 5 or 6 hours later, then do it again.

On weekends, I'd wake up at 4am, drive 20 minutes to Sharky's mom's apartment, slip into her bed as she slipped out of it without waking Sharky. She'd go to work and I'd stay with Sharky until about noon when she'd get home from work. Then I'd drive home, try to nap for an hour, then go to work at the home care job. This lifestyle lasted a couple of months before my health fell apart, I came down with pneumonia, and quit all three jobs unceremoniously.

How school districts manage to fill these paraeducator positions remains a mystery to me.

But hold on, the title of this post is "good things," correct? Let's reset...

Sharky is thriving in his new school environment. He is in an inclusion program, spending the majority of the day with the general education kindergarten. His academic skills have skyrocketed and are "approaching standard" in most areas.

More importantly, he is gaining in confidence in being social with people of all shapes and sizes. He stops and chats with neighbors, approaches children at the playground and engages them in play. He greets and interacts with people's dogs, an animal he used to become panic-stricken at the sight of. Yesterday we went for a walk to the playground in the snow, and he spent half an hour with a young couple and their dogs, taking turns throwing squeeky toys to them. As we pull out of the school parking lot after school, Sharky often rolls his window down to call out to various friends. They invariably look up at the sound of his call, smile from ear to ear, wave enthusiastically, and say "see you later Sharky!"

At the midpoint of the the school semester, the teachers gave each student a "survey" and asked several questions about how the year was going for them. One of the questions asked what student you would like to get to know better. Apparently, the majority of the students in the class responded to this question with "Sharky."

Sharky had his first school music concert a couple of weeks ago. He took to the stage with considerable aplomb. I could see from watching his lips he was a pretty unsure of the words, but he definitely knew the tune. And not only that, he apparently had either worked out or improvised some intricate hand gestures and movements to the songs. Not a trace of fear at being up on stage under bright lights crept in. He did manage to immediately spot me among the crowd of hundreds, which made for lots of great photos...

We just received Sharky's report card from the first semester, which included a narrative report in addition to the number grades. Some excerpts:

"Sharky is a kind, confident, and cheerful member of the class. He is having a wonderful start to his kindergarten year in the Montessori environment. His kindness and love of learning is appreciated and recognized by both his classmates and teachers...Sharky has many friends and is always able to make his classmates smile. I really enjoy having Sharky in our class."

I suppose this sort of praise is music to any parent's ears, but I also believe it is made all the more rewarding given what Sharky has been through. He is described as confident - the boy who had to be pulled from day care after a month because he was spending the entire three hour sessions standing at the doorway, crying, waiting for one of us to arrive and take him home. He is cheerful - the boy whose emotional outbursts were so severe it brought on a call to the police from a neighbor, as was famously documented in the Seattle PI. He is praised for kindness and love of learning - the boy who, when finding himself unable to follow what was going on during preschool circle time, would take to kicking the children around him for stimulation. He has many friends - a child who, like so many children with Autism, has mostly led a life of isolation, brought on by the lack of daycares, school programs, and social groups that could or would accommodate his behavior.

When he was two, he'd be playing happily, then suddenly pause, stare off into space, and then drop to the ground...screaming. Blood-curdling screams. Nothing seemed to help, and most attempts to help only seemed to inflame the hysteria. Eventually, something such as placing him in a stroller and going for a walk might bring a sudden end to the outburst, even though attempts to do the same thing moments earlier had been met with kicking and increased screaming.

When he was three, he would go to sleep at night, then wake up 2-3 hours later, screaming. The only thing that ever calmed him down was getting in the car and driving. We'd drive around for hours, between the hours of midnight and 4 in the morning. Then we'd go home, and as soon as we got out of the car the screams began again. This time, however, the attack would be slowly placated by a Winnie the Pooh movie, which we'd watch as the sun came up.

To have witnessed these attacks is to know that Sharky has been through a form of hell few of us have, or can even imagine. And out of this fire has emerged a child of such sweet disposition that he charms everyone he encounters almost immediately. And I believe people subconsciously pick up on the wisdom of experience he bears, despite being just six years old.


Some Christmas Recollections, Good and Bad

In 2005, Sharky was three. We went to my mother's apartment for the occasion. She brought my father home from the nursing home to spend the day with us, only to find the elevator to her building was non-functioning due to a power outage caused by a storm. She only lived on the second floor, but given my father's confinement to a wheelchair, that flight of stairs seemed more than daunting. After some discussion, we decided my mother and I would try to assist him in walking the stairs.

We were worried that Sharky might get underfoot. or somehow distract my attention from the task of helping my father up the stairs. Yet when we started up the stairs, Sharky immediately recognized the seriousness of the situation, and perched himself a few steps up the stairwell. He looked directly into my father's face, gestured towards him, and said, "it's OK grandpa, you can do it, you can do it..." And as we started up the stairs, Sharky backed his way up ahead of us, maintaining a solid distance, still gesturing, "just slow down, slow down, easy, easy, you can do it, almost there grandpa, that's it, that's it."

When we reached the top, we placed my father into the plastic chair we'd moved to the stairwell, and scurried back down to fetch his wheelchair. As I was walking down, I turned and looked up the stairs just in time to see Sharky pat grandpa on the shoulder and say, "you did it buddy! Good job! Give me five! Yayyyy!' He then gave grandpa a hug. To this day, recalling this moment will bring tears to grandpa's eyes...every time.

In 2006, Sharky was four and in the throes of deep anxiety over toilet training. He was peeing in the toilet, but refused to poop. And when we stopped allowing him to wear diapers, figuring he'd then have no choice but to use the toilet, he dug in his heels and just didn't poop...ever...for a month.

It all came to a head on Christmas day. Sharky was fussy, angry, and having multiple outbursts. Then in the late afternoon he curled up into a ball and winced with pain in his abdomen. He wouldn't move. Christmas dinner was served, and the rest of the family ate while Sharky and I lay in bed.

When he started crying from the pain, it was obviously time to go to the hospital. I quickly packed our things, called the moms to tell them what was happening, and we left for the ferry from Bainbridge to Seattle. I told the ferry workers I had a sick child I was taking to the hospital, and they cleared things out for us to be the first off the boat. They also fetched an EMT who happened to be on the ferry, but he said there was nothing he could do here, we'd just have to wait until we got to the hospital. I found a seat on the ferry and Sharky laid silently, in the fetal position, in my lap the whole way over. He didn't look upset, or scared. He seemed merely resigned to his fate.

We had a very quiet, traffic-free drive from the ferry terminal to Children's Hospital. Upon examination there, we were informed that he had withheld his stool to such an extent that the rectum was severely dilated. This had caused impaction to the point that even if he wanted to at this point, he wouldn't be able to have a bowel movement without the assistance of an enema.

We parents pinned Sharky to the table while the doctor inserted the tube into his rectum. There was incredible screaming, screaming like I've never heard. Screaming as if i might imagine when an exorcism is taking place. After the enema was done, we waited. Nothing happened. So after an hour, we did it again. An hour after that, still nothing, so repeat the process. Through it all was the screaming.

When still nothing occurred, they sent us home with some home enema kits and instructions on how to do it at home. I took Sharky home with me that night, and we stopped at a Bartell's Drug Store. I still wonder what we must have looked like to the employees and fellow shoppers there that night - 11pm on Christmas night, buying miralax and prune juice for Sharky and a bottle of cheap wine for me, both of us ravaged to our cores, Sharky still wearing his emergency room bracelet.

The next day Stormy and I held him down multiple times while Lillie inserted the tube and poured in the oil. Eventually, after several more rounds, the dam broke.

And now in 2008, we have happy school concerts and glowing report cards for the holidays. But through each of these experiences, the song for me has remained the same: no regrets, no wishes for things to be different than they are, just gratitude to have this child, this person, this soul in our lives.

I am so, so blessed.

Follow up on Feeling....

Thank you everyone for your comments, and apologies for not responding individually. This post generated a significantly larger response than I'm accustomed to, so I wasn't prepared to propel the dialog.

There are themes that seem to keep coming up that I think need to be addressed. I'm referring to the comparison to ADD, ideas about medication, and insinuations of lazy parenting.

The first step in treating a child with Autism is not to medicate them. Nor is it the 2nd, 3rd, 4th, 5th, 6th. etc...Autism is not treated with medicine. There is no known "Autism drug." There is no Autism equivalent of Ritalin.

My son has never taken any medications. No one has ever suggested that he take any medications. I would sooner spend a weekend with George W. Bush and Michael Savage than see my son put on medication.

I have worked with dozens of people with Autism over the years. I have yet to meet one who was on any medication for the purpose of combating autism. Some are on medications to prevent seizures, as seizure disorder can sometimes accompany Autism. Some are on anti-depressants, because they seem to have fewer instances of aggression when taking these. Some might take meds to help them sleep, as Autism can sometimes cause a person to go without sleep for weeks, to where it becomes a serious health risk. None are on medications to make them "less autistic."

Autism and medication simply do not go hand in hand in anyone's mind who has any first hand knowledge of Autism.

Therefore, claims that people seek out Autism diagnoses out of lazy parenting are nothing if not tragically comical. Any parent who tries to get his or her child branded Autistic out of laziness has a unique and brutal form of comeuppance in store.

Upon receiving a diagnosis of Autism, the parent is promptly assigned the task of getting their child into the system of their local Division of Developmental Disabilities, of working with the school system to make their child eligible for special education services, then negotiating an Individualized Educational Program (IEP) and locating a classroom suiting their child's needs. He or she can then move on to the process of researching all the fine print of their own insurance policy, and then the finer print of dozens of other insurance companies, searching to see if his or her child's therapy needs will be covered.

Upon realizing that they won't, the parent can then begin researching and networking online with other parents as to where in the country or the world they might be able to move where there will be some governmental support for such therapies.

Upon realizing that this place does not exist, the parent can then begin paying out of pocket for extensive therapies - speech, occupational, physical, behavioral, etc. This entails lots of research, phone calls, and visits. Once a therapist is found and wait lists are waited through, the parent is then free to drive their child to random places in the general vicinity of where they live, before or after school to go through the repetitive, often mundane rituals required to improve the cognitive functioning of a child with Autism.

The lazy parent is then free to work second jobs in order to pay for all these therapies.

The pie in the sky for parents of children with Autism is Applied Behavioral Analysis (ABA) therapy. This is the therapy that supposedly brings about the greatest advancement for people with Autism. This treatment does not involve medication, nor does it allow for laziness.

The therapy is intensive, often 30 hours/week. It involves breaking down each task into minute steps. Through exhaustive repetition, combined with consistent encouragement and reward for each proper step the child performs, the child can eventually learn to do simple tasks. Simple tasks that previously had seemed impossible.

And none of these therapies involve the therapist doing all the work while the lazy parent convalesces. The therapists merely employ strategies and offer an intensive refresher each time they see the child. These strategies are then placed into the lap of the parent and it is well expected that they work on them every waking moment. Therefore, over the course of a typical week, child, parent, and therapist all engage in an ongoing process requiring utmost patience and diligence.

If you stare down a parent of a child with Autism and claim they are lazy, I would encourage you to then go to a zoo, stare down a giraffe, and accuse the giraffe of having no neck. Whether you genuinely believe the giraffe has no neck, or if you simply aim to antagonize the giraffe with your outrageous claims, I can guarantee you will get the same result: the giraffe will continue doing his or her work, pausing only momentarily to give you that inimitable, quizzical, giraffe look of puzzlement.

I never want to cast aspersions or hurt feelings, but if you are someone who knows little to nothing about Autism, and your aim is to hurl insults, I urge you to remain silent on the subject. There is a time for speaking and a time for listening. If you fall into this camp, your time for the latter is approximately now.

Thank you all again...