STILL LIFE WITH SHARK

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

2012-01-24T22:25:00.000-08:00

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

2012-01-18T14:18:00.000-08:00

(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

2011-12-20T17:01:00.000-08:00

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

2011-12-19T20:31:00.000-08:00

(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

2008-12-26T10:10:00.000-08:00

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

2008-12-20T09:24:00.000-08:00

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....

2008-10-20T22:24:00.000-07:00

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...

Feeling Savage and Leary

2008-10-16T09:51:00.000-07:00

This has been much written about in many spaces with far greater readership than this blog, but I feel compelled to take a break from my tales of school placements to share some comments that reveal the emergence of an inevitable Autism backlash.

Michael Savage is a UC Berkley Graduate and former herbalist, turned "Compassionate" Conservative talk show host. In 2003, he was fired from his show on MSNBC for the following rant after a caller insulted him, then identified himself as being gay:

"Oh, you're one of the sodomites! You should only get AIDS and die, you pig! How's that? Why don't you see if you can sue me, you pig? You got nothing better than to put me down, you piece of garbage? You got nothing to do today? Go eat a sausage and choke on it. Get trichinosis. OK, got another nice caller here who's busy because he didn't have a nice night in the bathhouse and is angry at me today?"

He later defended his actions by claiming he didn't realize he was on the air when he said it. Savage has waged a long-term (and still ongoing) assault on the gay and lesbian community, often referring to "the gay mafia," likening the legalization of same-sex marriage to making it legal to marry a horse or a mule, and comparing flamboyant homosexuality to the excesses of the Weimar Republic, which he claims gave rise to Hitler and the Nazis.

Despite having lost his show on MSNBC, Savage remains one of the most popular radio talk show hosts in the world. His show is broadcast on 350 stations, with 8.25 million listeners.

On his July 16th show, Savage took time out from the gay-bashing to unleash a sickening attack on some old standby targets of conservatives - minorities and the poor - and also upon two new targets: asthmatic children and children with autism.

From the July 16 edition of Talk Radio Network's The Savage Nation:

'Now, you want me to tell you my opinion on autism, since I'm not talking about autism? A fraud, a racket. For a long while, we were hearing that every minority child had asthma. Why did they sudden -- why was there an asthma epidemic amongst minority children? Because I'll tell you why: The children got extra welfare if they were disabled, and they got extra help in school. It was a money racket. Everyone went in and was told [fake cough], "When the nurse looks at you, you go [fake cough], 'I don't know, the dust got me.' " See, everyone had asthma from the minority community. That was number one.

Now, the illness du jour is autism. You know what autism is? I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is.

What do you mean they scream and they're silent? They don't have a father around to tell them, "Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, idiot."

Autism -- everybody has an illness. If I behaved like a fool, my father called me a fool. And he said to me, "Don't behave like a fool." The worst thing he said -- "Don't behave like a fool. Don't be anybody's dummy. Don't sound like an idiot. Don't act like a girl. Don't cry." That's what I was raised with. That's what you should raise your children with. Stop with the sensitivity training. You're turning your son into a girl, and you're turning your nation into a nation of losers and beaten men. That's why we have the politicians we have.

It can be daunting, even awe-inspiring, to stare straight into the face of such galactic proportions of stupidity, wretchedness, and depravity as these comments. There's also a temptation to just ignore it. After all, why even dignify such pap with a response?

But consider this: 8.25 million listeners. And consider this: now we have "comedian" Denis Leary joining in on the fun in his newly released book:

“There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can’t compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don’t give a shit what these crackerjack whack jobs tell you - yer kid is NOT autistic. He’s just stupid. Or lazy. Or both.”

Pardon me for the jarring juxtaposition, but let's go straight from Savage and Leary to a slightly more enlightened human being, Martin Luther King:

“Cowardice asks the question, 'Is it safe?' Expediency asks the question, 'Is it politic?' But conscience asks the question, 'Is it right?' And there comes a time when one must take a position that is neither safe, nor politic, nor popular but because conscience tells one it is right.”

And let us make no mistake about it: the Savages and Learys of the world are cowards. They are cowards, and thus the question "is it safe?" comes up. Sadly, they don't even need to consciously ask this question any more. Of course it's safe. Assaulting children is always safe. Persecuting those without a forum to defend themselves - whether they be children, people with disabilities, the impoverished, the sickly, or some blessed combination of these - is always safe.

And there's no doubt it is all expedient and politic. It is vitriol such as this that fuels the allegiance of the "Savage Nation," keeping the ratings up. And as far as Leary, the "edgy" persona he cultivated in order to propagate his comedic career has now expeditiously found a tow hook in the form of Savage.

And so where does conscience and what is right enter in? Sadly, it once again is left to the muted voices of those who are being attacked, those voiceless people that bullies like Savage and Leary delight in piling on. Usually, those people consist of people of color, homosexuals, immigrants, poor folks, Muslims, or some combination of the above.

Today, as a parent of a child with Autism, it's my turn.

Let's start with what is not right.

The assertion that minority children fake asthma in order to garner excessive welfare benefits - even when divorced from the repugnant and typical insinuations that people or color are lazy free-loaders who devote their lives to exploiting "the system" - is inane.

According to a study conducted by the National Institute of Health (NIH), low-income children with diagnosed asthma, compared to children generally, suffer disproportionate levels of hardships such as gaps in insurance coverage, housing problems, and insufficient food after diagnosis.

Furthermore, the children most likely to experience hardships are those afflicted with severe asthma. In fact, 78% of low-income children with severe asthma experienced one or more of the above-mentioned hardships, compared to 64% for children with mild to moderate asthma.

And, in spite of this obvious need for services, according to NIH, "children with severe asthma were no more likely to use housing, childcare or SSI benefits, and were less likely to get WIC benefits than children with less severe asthma."

So not only are children with asthma not reaping untold fortunes from the debilitated social welfare system of the United States, they are actually suffering most from its failures. And the more severe their condition, the less assistance they are likely to receive.

The reason minority children are suffering disproportionately from asthma is because minority children are suffering disproportionately from poverty. And with poverty comes greatest exposure to the side-effects of our corporate, toxic culture.

Environmental Racism. What could possibly be more tragic than the fact that such a phrase needs to exist? Yet it exists out of perfectly legitimate reasons. Our society, as presently constructed, necessitates the creation of massive quantities of filth and toxicity, and all that toxic mire must be generated, exploited, and dumped somewhere. And you can rest assured that isn't going to happen in an affluent white community. It's going to happen somewhere where the people are poor, powerless, and disenfranchised. It is going to be inflicted upon the same people that the Savages and Learys of the world inflict their vitriol.

Take an extreme case for example. East St. Louis. East Saint Louis is 98% African American. It has one of the highest rates of child asthma in America.

The people of East St. Louis are impoverished and powerless, as is the City itself. Most rely on welfare to survive, as local commerce and industry are almost non-existent. Even the city government has laid off most of its employees over the last 20 years due to lack of funds.

East St. Louis lies in the Mississippi River's floodplain, surrounded by the Illinois Bluffs. The bluffs, predominantly white and middle to upper class, have never been compelled to pay taxes to assist with flood control, despite the fact that it is their drainage that floods the floodplain and East St. Louis. East St. Louis lacks the funds to be able to pay for this itself.

The flooding in East St. Louis is especially problematic, because the deficient sewage systems of the town are entirely contaminated with the toxins of the chemical plants that surround the town. When flooding occurs, the poison in these sewers flows through the streets and the homes of East St. Louis.

Monsanto and Pfizer have maintained chemical plants here for years. Apart from the release of toxins into the sewer system (not to mention the soil and the drinking water), the plants release a steady stream of smoke that literally forms a perpetual cloud over all of East St. Louis. From time to time, the plant emits a blast considered to be toxic, at which time an alarm sounds. People who have breathed the smoke get a payment of a few hundred dollars, if they first sign a release relieving the company from liability. The companies that operate these plants have formed small incorporated areas, outside the jurisdiction of East St. Louis, and therefore are exempt from paying any taxes to the city.

So, to recap: affluent white communities on the bluffs are excused from assuming fiscal responsibility for the preventable occurrence of the flooding of East St. Louis. Multinational corporations, earning billions of dollars in revenue, are excused from taking responsibility for preventing the release of their toxic chemicals upon the environment and the residents, and from cleaning up the released toxins. The voiceless people of East St. Louis absorb all the misery that comes from all this, and their children become afflicted with asthma and other diseases, such as lead poisoning, liver tumors, and abscesses.

But heaven forbid a mother in East St. Louis, out of desperation, should ever once coach her child to fake a cough in the misguided hope that this will somehow derive them an additional benefit of some sort. For this act will surely be noted by the ever-observant, astute mind of Savage, who will quickly pass it along to his 8.25 million "listeners" as evidence that their bigotry is actually righteousness.

As for Leary...Diagnoses of Autism tend not to come from a "shrink," or a "crackerjack whack job" as he so assonantly describes them. Perhaps Leary has not heard, but Autism is not a psychological or psychiatric condition. It is a neurological disorder. Diagnosis, in our case, initially came from a medical practitioner, with the advisory of licensed physical, occupational, and speech therapists. Eventually, a proper diagnosis should come from a neurologist, a process we have yet to go through, but will likely have to if we ever hope to receive a state-provided benefit.

Between the two of them they did say something that is right. That would be Savage. He is right that Sharky - a child diagnosed with autism - lacks a father who calls him an idiot, a moron, a putz, a dummy, a brat, or a fool. He is right that Sharky lacks a father who tells him not to cry, not to act like a girl.

Savage claims to have a father who told him all these things, and out of cowardice proclaims his father was right, and begs us all to not deviate from his father's methodology, perhaps out of some desperate dream that universal adherence to this cancerous way will somehow vindicate it, and provide Savage with a specious peace in the sewage-flooded nest he has sought shelter in.

Despite his venom, despite his daily efforts to seduce 8.25 million listeners into his own cauldron of hell, I feel genuine compassion and pity for him.

Years ago, in his HBO special, “No Cure For Cancer,” Leary spoke – touchingly in fact – of his tough Irish father, and the understood rule that even a small child was not permitted to cry, even upon having an arrow lodged in his head.

I feel genuine compassion for him as well.

I cannot, however, adhere to the path they beckon us toward. I will never do my child like that, and I trace it back to a lunch break years ago at a Wendy's in Bellingham, Washington.

I was working as a barista, and if I neglected to bring a lunch with me to work, the only place I could make it to during my 30 minute lunch break was the Wendy's adjacent to the the coffee shop. I sat there one day, eating a salad, and noticed my place mat was adorned with rows and rows of pictures of children.

I read that these children were all foster children, and we fast-food eaters were being asked by the Wendy's corporation to consider adopting one of them. About 3 rows down, slightly to the right of center, my eyes locked in on one of the photos. Even in small size, on a fuzzy printout discolored slightly by my soda's condensation, this child's eyes burned. The look was simply, purely, unmistakably one of wounded pride. The child was cooperating with the adults around him by posing and smiling for the picture, perhaps realizing that the emotions he exuded for this photo could very well dictate whether or not he found a home to live in. And at the same time, he seemed fully aware of how wrong this all was.

This child, as all children, had an innate sense of the promise of existence, and consequently knew that this promise had been broken. Born a proud warrior, and now, by the age of 8, disillusioned and hurt. Wounded pride.

And I thought to myself right then and there, that should I ever have a child I will fight with everything I have to make sure this never happens to him. And years later, when I found out I was to be a father, I made this vow to myself and to my unborn child:

Whatever happens, no matter how tired, frustrated, or desperate the challenges of raising you make me, I will never shame you. I will never insult you. I will never, ever do anything to take away your pride. If I ever were to do this to you, it would be a violation of what is right, and it would be a betrayal of you. And should I ever betray you as such, I would not at all blame you if you found it difficult to ever trust another soul. And my apologies would then go out to the world for having cast another lost, hurt, betrayed soul into its midst.

And I thought clearly of what my hopes were for my child. And they were simple. I hoped that I would have a healthy, happy child. And I hoped that my child, both from his own innate strength and from my support, would have the self-confidence, pride, and strength of character to be his own person, to follow his own path, and withstand any indignities the world might throw at him and stay true to himself.

That, to me, is what it means to be a man (not a beaten man: Savage and Leary are the beaten men). And at the same time, let's not draw lines along gender. Sharky is a boy, and so I talk in terms on what it means to be a man. But truth be told, this is what it means to be human.

There exists a higher plane of being, one that transcends this messy matter of arguing with the crippled and wounded thinking of Savage and Leary. Having just now sufficiently vented my spleen, I now am on this plane, and I find myself – oddly yet comfortably – capable of devoting the same vow I gave the unborn Sharky to Savage and Leary.

The Savages and Learys, when taken in proper context, are our Bodhisattvas, always nudging us closer to enlightenment. Their attacks on children with Autism, people of color, the poor, and homosexuals, have reawakened me to the presence of all of these communities within me.

I am the parent of a child with Autism, and am raising that child with a lesbian couple. I am the child of a man who grew up in abject poverty, suffering all the hardships outlined in the NIH reports. The same man spent the better part of his adult life as a devoted teacher and advocate for low-income youth, incarcerated youth, and miseducated youth - the vast majority of whom were people of color.

All of these communities come together within me, just as many communities come together within most of us. And as the attackers grow bored with their usual punching bags, their expedience and cowardice compels them to seek new targets that they perceive to be voiceless. But with each new community they attack, they step upon the sacred grounds of more and more of these "voiceless." And in doing so, they awaken us to our commonality, they drive us towards the realization that we are all together. And perhaps this realization will give us our voice.

For Savage and Leary, I truly have the same hopes as I do for Sharky, just as I hope for this for myself, just as I hope for this for all of you.

Really now, what else could I possibly hope for?

“A coward is incapable of exhibiting love; it is the prerogative of the brave.”

- Mohandas Gandhi

Citizen Complaint 08-22...Part 1

2008-10-12T09:38:00.000-07:00

April and May of 2008 were dark days at the EEU. The hallways and side rooms were like impromptu group therapy sessions. It seemed like each corner you turned brought you face to face with a parent weeping, spitting with rage, or both at the same time. Networks of information exchange formed spontaneously, with each parent sharing with the others what little crumbs of information they'd managed to learn. The sum of all our combined knowledge, however, still left us all bewildered, confused, and frustrated.

Each state in the US, as far as I know, has some sort of office that oversees public education in all of the districts. In the case of Washington, it is called the Office for the Superintendent of Public Instruction (OSPI). OSPI has various resources available regarding dispute resolution, including the Citizen Complaint.

The use of the Citizen Complaint is explained as such on the OSPI web site:

Any individual or organization may file a citizen complaint if it believes a school district, another public agency serving special education students, a private agency under contract with a public agency to serve special education students, an educational service district, or the state has violated federal or state laws or regulations implementing IDEA. The complaint must be in writing and it must be signed.

It was awkward writing my complaint, because due to the district's secrecy and lack of communication I didn't really know what I was complaining about. So my goal was to lay out the results of whatever went on - the dozens of special education students without placements - and also make the district's lack of communication an integral part of the complaint.

In the portion of the form that requires a statement of the violation, I wrote:

I believe the District violated Part B of the IDEA by:

The school district has failed to provide a seat in any of the three choices for schools presented by our IEP team, or to place our son in any program currently in existence. We did not receive notice of this fact until April 25, 4 weeks after placement letters were mailed out. The district intends to create a new program somewhere in the district to place him in. They will not provide us with any information as to location, classroom staff, or program model until after the placement has already been made. They will not inform us of the placement until June 1. They have, in effect, eliminated any possibility of input from the parents and IEP team in determining placement, and cut into our window for appealing the placement by two months. There apparently are 35 students in the same predicament as our son – and nine in his current classroom alone – so it is obvious the district has made a serious error in evaluating the space needs in the district's classrooms.

I believe an investigation should be launched that seeks answers to the following questions:

1)How did the district come to miscalculate the demand for seats to such an extent?
2)How did these students without placements come to be the ones left out? (My son and I live 8 blocks from our first choice school, yet were unable to get a seat. Were there actually children his age with Autism seeking Autism Inclusion program model classrooms who lived closer than us?)
3)How could it be that 9 out of 35 students without placement are from the same classroom, room 129 at the EEU?
4)Why was my son not even placed on a waiting list for any of the 3 schools we listed on our preference form?

At the end of the form, the complainer is asked, "What would you like to see changed?"

My response:

I would like to see a special education department that is competent enough to ensure students all receive school placements at the time they are supposed to.

I would like to see a department that cares enough about families to actually be proactive in informing them when a problem such as this arises, or at the very least responds promptly to phone messages and emails from parents asking for information.

I would like for staff in charge of answering phones at the enrollment and special education offices to be trained well enough to provide accurate and helpful information when parents call with concerns (and in particular, I would very much like it if EVERY employee at the enrollment office was fully aware that they are responsible for the enrollment of special education students as well as general education students).

I would like for the date of placement letters to be changed to after spring break so in the ensuing period of time there are actually administrators at their desks, rather than on vacation, to answer parent's questions.

I would like a process put in place where if, for some reason, a student such as my son does not get any of his three choices for schools, we have the opportunity to reassess the situation with our IEP team and make further preferences known, rather than being randomly assigned to whatever school the district's computer determines, or being left with no school at all.

In general, I would like to see the school district held somewhat accountable for their actions and mistakes.

The next step was to exchange phone calls and emails with the OSPI investigator, providing her with additional explanation, as she attempted to determine whether or not they would conduct an investigation. Her principal question to me was if I was alleging that procedures were violated, or that my son had been discriminated against. My response? Both.

...My son has been in the Seattle school district system for about a year and a half now, and it has been one continuous struggle. When we have attempted to speak with people at the district about problems in the past, we have never been able to get even the simplest questions answered. When we attempted to question placement procedures that we felt were unfair from last year's placement process, the district abruptly canceled an upcoming meeting with us and said they would need to reschedule for a time when their legal counsel could be present. They then forbid our son's teacher from meeting with us without theirlawyers there. It is a shameless cycle of deceit followed by intimidation.

My main hope in filing this complaint is that some of these issues are brought to light and an external entity can take steps to hold the Seattle school district accountable for their actions. I believe that if a large number of parents of children with disabilities were given the opportunity to tell their stories of what they've gone through with this district, it would raise a lot of eyebrows.

I'm uncertain as to where this leaves us. I do not know if it is a matter of discriminatory policies that leads to all of these serious problems, or if the issue is the presence of an ineffectual and callously indifferent group of administrators mismanaging the policies. My inclination, however, it to believe that it is both.

She responded to this email by informing me that they would proceed with the investigation through the IDEA provisions regarding placement. She later explained to me that I could pursue allegations of discrimination through the Office of Civil Rights.

The next step was for OSPI to inform the district that the investigation was being conducted, present them with the complaint, and give them three weeks to respond. The district was to investigate the complaint themselves, and send OSPI a written report of their findings. Seems a bit like the fox guarding the chicken coop, but oh well.

The district's general counsel instead sent OSPI a letter, stating the investigation should be called off, because my complaint was "premature."

To accommodate a systemic capacity issue, the District is in the process of creating six additional special education programs for students in the primary grades the 2008-2009 school year, as well as creating general
education kindergarten classes. The District believes that it is important to note that there are general education families who are in the same position as Mr.Munat as a result of capacity concerns. The District is
attempting to resolve these capacity concerns for all impacted students as quickly as possible.

I was actually disappointed at how poorly done this letter was. I thought their legalese (systemic capacity issue? will probiotics help with that?) was transparent and easily dismantled. I also thought it odd that they seemed to be defending themselves against a discrimination claim (all the mentioning of how general education students also were without placements too - in this excerpt and elsewhere in the letter) when clearly the OSPI investigation was regarding procedural practices.

OSPI gave me the opportunity to respond to this, and give them reason as to why they should in fact continue with their investigation. I decided my response should first off blow apart their legal speak. This would, I reasoned, not only reveal the emptiness of their arguments, but also send a message to all parties involved that I am no dummy, and they are going to need more than sleight of hand tricks to veer me off course.

Dear (OSPI),

I received your letter, along with the letter you received from (the district's counsel) regarding the district’s claim that the Citizen’s Complaint I have filed is “premature.” Thank you for bringing this to my attention. I have some comments on the subject.

To begin with, I’d like to take a moment to analyze the phrase used by(the district's counsel), “a systemic capacity issue.” This term is folded neatly into the language of the letter, and seems to imply that the systemic
capacity issue is a naturally occurring event, one which the district is now working to “accommodate.”

As I understand it, the complaint I filed, and the correlative OSPI investigation, seek answers as to the cause of this systemic capacity issue. Therefore, the concept that the district is implying here is specious at best. It has not been established that the systemic capacity issue is something for which no fault or blame can be attributed, because the investigation has not yet been conducted.

(The district's) description of their efforts to “accommodate” the systemic capacity issue is therefore based upon the assumption that the issue is in fact a situation lying outside the realm of the district’s
responsibility. In so doing, she attempts to relegate the systemic capacity issue to being a closed chapter of the past, while at the same time claiming that a proposed investigation into that same issue is “premature.”

The capacity issue exists now, and has existed since at least March 28th, when placements were made for the coming school year. Therefore, investigating why and how the issues came about is not premature. Regardless of whatever efforts the district is making to create new programs, significant damage has already been done.

I can’t help but wonder if it had been members of the school district who had anxiously awaited the arrival of a placement letter for weeks, hoping for the best and fearing the worst, before eventually having the worst confirmed, if they would still consider a complaint on the issue to be “premature.” Had it been they that made dozens of phone calls and emails, queried fellow parents and school staff, only to be told nothing, or told
inaccurate things, or to be completely ignored, would they still feel it is premature to complain? Had they watched as possibilities for private school options went by the wayside as classes filled and deadlines passed,
all the while still waiting for word from the public school system, would they still feel this was a premature time to act?

Had they been the ones to spend countless hours researching, touring, and visiting schools, then hours more discussing options with their children’s I.E.P. teams, only to have the child denied access to any of the schools
considered, and consequently find themselves on the outside looking in without input as to what happens next to their child, would they still at this point consider objections premature?

This describes only a fraction of the stress and anxiety my family, and the other families I have spoken to in our situation, have been experiencing over the past six weeks as a result of the so-called systemic capacity issue. Our plight is a living, breathing reality, not doublespeak, and the cause of it deserves to be investigated as soon as possible.

The district casts itself in the light of an entity attempting to “accommodate a systemic capacity issue,” and “resolve…capacity concerns.” What are the causes of these issues and concerns? That is what this investigation is about, and there is no need to wait to see how the district responds to the issues and concerns before looking into what caused them in the first place.

(The district's counsel) closes her letter by stating that “Mr. Munat can again raise the issue if he still has concerns regarding the process for his son’s assignment” after a placement has been made. This statement makes me suspect that the district’s true motivation in seeking to delay the investigation lies in the belief that a placement will pacify me. This is incorrect. My motivation in filing the complaint is not to compel the district to give my son the placement of our choosing. Rather, it is to illuminate any deficiencies in the placement process that could potentially continue to bring harm to special education students and their families in the future. In short, I want to make sure that my family, and other families of children with disabilities in Seattle, do not ever have to go through this again. The district has offered no such assurance.

I would be happy to discuss this matter in greater detail with you if you feel it would be helpful in making a decision as to whether to proceed. Please feel free to call me or write at any point between now and the May
16 date of your decision. Thank you again for keeping me included in the process.

Yours truly,

Ted Munat

I really don't communicate in this manner in real life. Whenever I read these letters I'm always a little shocked: "did I write that? goodness that's pretty blunt!"SPS just brings it out in me, particularly when discussing my all time favorite past time, "systemic capacity issues."

I received this response from OSPI a day or two later, and so did the Superintendent of Seattle Public Schools...

Dear Dr. Goodloe –Johnson and Mr. Munat:

I received a letter from (district counsel) raising an issue regarding whether or not this complaint was premature, and response from Mr.Munat regarding this issue. I spoke to them both today, regarding this issue.

After discussing the issue with both, we have determined that OSPI will proceed with the complaint. The due date for the district’s response would have been May 25, 2008. The due date for the District’s response is extended to June 10, 2008. We are not extending the date for the decision at this time.

So, I win a round. The investigation proceeds. Of course, the district has accomplished its everlasting goal, detailed on this blog before, of stalling. They got themselves an extra 16 days to conjure up a response. That extension also takes it past the June 1st promised date of informing us of Sharky's school placement.

Onward we plunged...

Return of the Living Dead Shark Blog!

2008-10-09T14:50:00.000-07:00

Yes, it's been a long time since this blog was added to. Call it summer vacation. But rather than dwell on any reasons for the absence, let's get right back to it. I'm here, I'm ready to go again, there's much to tell, I still love my son and I'm still a disgruntled dad. So without further ado...

I had left off with the battle we had just to get an IEP meeting to discuss placements for the 2008-09 year. It was a bruising heavyweight bout, but it ended seemingly happy. We had three solid choices of schools. Choice 1 was Bagley, which is a great school with the unique element of an Autism inclusion program meshed with a Montessori model classroom. Choice 2 was a return to the EEU, which we love for too many reasons to outline in this space. Choice 3 was North Beach, a blended kindergarten that was not as distinctly excellent as the others but still some place we'd have been more than happy to have Sharky attend.

We also felt confident that we'd get one of these. Bagley is 8 blocks from my home and distance is one of the first determiners for placements. EEU is further away but is an "all-city draw," so distance ceases to be an issue, and Sharky had already demonstrated that he thrived in that environment (and the bureaucrats care about such things right? right?). North Beach was about 1 mile from my home.

Plus in a karmic sense we just kind of figured they'd give us one. Just this once.

They did not give us this one just this once.

March 28th was the date for placement letters to be sent out. The day came and went. No letter for us. Several more days went by without word. Finally, about a week later, I started making phone calls.

Now this brings us to a lovely tradition employed by the district. March 28 is the day before spring break. They send out the placement letters (or in our case they don't) and then they all flee for the hills. They carefully select the most incompetent and socially inept employees to remain in the office to dispense as much misinformation as possible to any hysterical parents who call up with questions such as, say, why haven't we gotten any word about where, or if, our son is going to go to school in the fall.

You see, the district is all about stalling. In the previous post about this whole sordid affair I described the hand behind the back game. Once that runs out, there's the run for the hills and hide game. The more stalling, the less time there is to file appeals, complaints, or other quests for justice. Also, the more stalling there is the more likely the parent just gives up, unable to sustain the level of rage that was initially fueling their actions.

I called the enrollment office. The person who answered the phone asked me for my son's name. She looked it up and said "Oh. He's special ed." I replied that yes indeed, he was enrolled in special education. She then informed me that "special ed. kids don't get their placements sent out at the same time as the rest of the kids."

I found this rather difficult to believe, but nonetheless I asked her when the special ed. kids did get their placement letters. She told me, "I have no idea, we have nothing to do with that."

Apparently, the district's enrollment office staff does not realize they have responsibility for enrollment of my son or the hundreds of other children in special education. I informed the EEU principal of what had been said, and she emailed me back to say simply: "they're wrong."

In fact, the placement letters for special education students ARE sent out at the same time as everyone else's, and their enrollment IS handled by the enrollment office.

But this keeper of the phone lines did manage to delay my attempts to figure out what was going on by at least 12 hours. Excellent stalling. Mission accomplished.

I tried calling the special education department. They did nothing to refute the absurd notions the enrollment department had imparted upon me, and were equally unhelpful and rude. When I mentioned Sharky was at the EEU this year, she transferred me to the line of the consulting teacher for the EEU.

This didn't make much sense, since the consulting teacher responsible for his current placement is not necessarily going to be the authority on his placement for next year. It made even less sense considering that she transferred me to the former consulting teacher for the EEU, not the current one.
Apparently the folks who work the phones over spring break at the special education department missed a memo. And of course, the former EEU consulting teacher was out of the office for break anyway. I left a voice mail. One that was never returned.

It was not until the following Tuesday, April 8th, that I managed to speak with the appropriate consulting teacher. She said she would look into it and get back to me, which she did. She informed me that Sharky was one of a group of special education students who did not receive a placement.

She explained that there had been a shortage of seats for Autism Inclusion programs and some other models as well. But they had approval from the district to open more classrooms. She had no further information for me.

In the ensuing weeks, I learned that there were 35 kids at or around Sharky's grade level, with IEPs, without placements. Oddly enough, 9 of those students were currently enrolled at the EEU. So out of dozens of K-1 special education classrooms in the district, more than a quarter of the unplaced children were from one school.

At the very least, it seemed as though the district's failure to adequately estimate the demand for seats bordered on criminal. Throw in the fishiness of that ratio of unplaced kids at the EEU, and I suspected something very wrong had gone on, and the district was frantically working to cover its own ass - working so frantically on that, in fact, that there was apparently no time available to actually meet with the families of children without placements and address our concerns. And the concerns were many. They included:

Why did we spend all those hours upon hours evaluating schools, going on tours, meeting with teachers, culling down a list of our preferences, only to be denied them all? Where exactly do they intend to stick my child? Do I get any more say in the matter? Will this school they put him in be anywhere close to my home, or will he be on buses for hours per day? How can a classroom they throw together at the last minute possibly be adequate? Who will staff it? What space will be available – will it be in some portable unit dropped next to the parking lot behind the school building? Will the administration of the school embrace this last minute program, or will they resent having this put upon them?

But instead of allowing us to dialog with them about this, they hid out, and sent a form letter written by their legal department three weeks after we all had expected to be getting placement letters. The letter carefully avoided any wording that conceded errors in any way. In fact, it didn't even acknowledge that there were students who had ended up without placements. It just said the district was working diligently to create seats and would have them for us by June 1st.

June 1st.

I'd had enough. I spoke with a lawyer, and on her advice I filed a citizen complaint with the WA State Office for the Superintendent of Public Instruction (OSPI). Then I did the same with the Federal Government's Office of Civil Rights (OCR).

With OSPI, they can investigate a complaint to see if procedures laid out by IDEA were properly followed. With OCR, they can investigate to see if the children were discriminated against by the district because of their disabilities. In my case, the claim I made was that the district's placement procedures are inherently discriminatory against students with disabilities.

Which brings us to the next phase of the saga, which I will cover in another post, which I promise will be coming henceforth!

Thank you for coming back!

Happy Father's Day

2008-06-15T19:25:00.000-07:00

My mother asked we children to write something to our father this Father's Day, to let him know how we feel about him. This was my official submission...

Happy Father's Day Dad!

I want to share a few things with you.

I don't know if you remember this, but a while back you expressed to mom that you felt like your life had become meaningless, because you were not doing anything productive. You felt like you had nothing to offer.

First of all, the fact that you felt this way proves some very nice things about you. It proves that deep within you burns an intense desire to do good work, to do good deeds, to make the world a better place. This desire has been passed along to all of your children, and I'm sure has inspired many other people you have touched during your journeys.

I know I have been inspired by it. It has always given me a great sense of pride to know what integrity you have led your life with, and what a strong drive you've had to bring about justice in whatever way you could.

More importantly, your life has helped me to live my own under the assumptions that I am powerful, that I have a role and a purpose on this earth, and that I can and must fight for what is good and just. The most obvious and recent example of this is my dealings with the school district. My assumption when the school district tries to dismiss my son as meaningless is that I will fight them tooth and nail, with every ounce of strength I have, and never give up.

When I see other parents in my situation who are not willing or able to undertake the same battles I do, my automatic response is one of mystification.

What else could they possibly have to do but to see to the rights of their children?

Why else are they on this earth but for the service of love? And where else could this love be focused than upon their child?

It is alarming to me that people, in turn, look to me with wonderment and try to understand how I could be so willing to take on these challenges. But to me, sitting idly by is the challenge, and working to make it right is simply the natural way of life.

And this nature did not just zap me from outer space. It comes from a lineage that you handed down to me. And from what I've learned, it was a lineage that was highly damaged when you inherited it, and it was only your amazing efforts to repair it that allowed it to be passed along to me in such pristine shape. My responsibility is to polish it, ornament it, and present it to Sharky.

Second of all, I want you to know that your worth on this earth did not end when you had a stroke and onset of Lewy Body Dementia, and had to go live at Island Health. In the immediate aftermath of your stroke, I wish you could have witnessed the strength and spirit you showed in your fight to reclaim yourself and your life. I don't think you knew who you were or where you were at the time, but apparently you were filled with a strong sense that you needed to get back to where you had been with your family. I can only surmise that your life and your family must have been very important to you, based on the battle you waged to find us again.

And I hope you can see how this is a continuation of the same spirit you have had for as long as I can remember, the same one that inspired me and helped to make me the person I am today, which is a person that I feel good about.

I want to close by telling you a little bit about what you have meant and what you still mean to Sharky. Your kind, loving soul is still in tact. And Sharky, in all his wisdom, can feel it. He has always had an affinity for you. He always, even when his level of connection with others was in serious doubt, has been very in tune with you. There are no words to describe how meaningful and important it has been for him to be able to have a relationship with you these last several years since your stroke. It makes me very happy that we did not lose you that day. The dignified and brave manner in which you continue to live your life each day sets a valuable, meaningful example for him, and when the day comes that you pass on, even in death you will be teaching him. He loves you, and one day, when you are gone from us, he will remember you fondly.

So you see, your life today is not meaningless, because it has so much meaning to others. Mom told you at the time that the dignity and grace with which you have accepted your lot in life provides a meaningful example to your children of how to conduct our lives, and she was absolutely right.

Your life is your own, and when you reach the point where it is time for you to leave us all, please do so with our countless blessings and all of our love. Go with the peace of mind that comes with knowing that all of us you have loved, and have worked so hard to do right by and provide for, will be fine. The forces you long ago set in motion will continue to serve us after you are gone, and as such you will continue to remain with us.

In the mean time, we will be grateful for each day we have with you.

Love

ted

Victory?

2008-06-12T18:36:00.000-07:00

At one time I had hoped to use this blog to provide a neat, concise, chronological account of everything we've gone through with the school district, while interspersing some anecdotes about Sharky.

Unfortunately, things keep happening faster than I can write about them, and I have come to realize that the time has come to fast forward to the present...or the almost present anyway.

I mentioned in passing before about our current situation. Sharky was one of 35 special education students who somehow ended up with no school placement for the fall. Here's a recap of what led up to this little jewel...

We had a very contentious round of communication with the district back in January and February over our IEP meeting. We felt some very sketchy things had gone down with Sharky's placement the year before (more on this in a later post...time permitting), and we wanted some answers. So we managed to convince Colleen Stump, the director of the Special Education department, to come to our meeting. However, at the advice of a local advocate, I sent an email before the meeting to everyone who would be in attendance and outlined the issues we wanted to address, including the previous year's placement. I also informed them that we intended to have a parent advocate with us.

I received a quick response from Colleen Stump saying that in lieu of the issues we wanted to address and our plan to bring an advocate, they would need to cancel the IEP meeting and reschedule for a later date when they could arrange to have their legal counsel there.

This is classic school district bullying. You want to bring an advocate? We're bringing a lawyer. You want to ask questions? We're seizing control of your child's IEP process, and now you meet when we say you meet. You want to bring a slingshot? We're bringing a cannon.

We waited for over a week as the deadline for submitting our forms for school and service delivery model preferences fastly approached, and no word from the district. We sent out emails to everyone involved, giving them dates when we were available to meet, and Sharky's teacher responded with times she was available. No word from the district.

Then I sent this email to Colleen, and CC'd to all her subordinates so my contempt could be witnessed by all those who I'm sure dare not speak to her in such a way:

Colleen,

I admit I was stunned when you abruptly canceled our meeting scheduled for the 14th upon being informed of our intent to bring an advocate to the meeting, as we are perfectly entitled to do. But I am downright appalled that since that time you have allowed 11 days to pass without so much as making any attempts to reschedule. A week has passed since Lillie and I both provided you with dates and times that would work for us, and you have not responded. This in spite of the fact that time is running short and our deadline is fast approaching.

Given your unwillingness to speak with us in good faith or to treat us with any modicum of decency, your presence is no longer requested at our son's IEP meeting. We will work with our IEP team regarding decisions on placements for the 2008-09 school year. As for the concerns I expressed in my previous email, we will be pursuing these matters through different avenues.

Sincerely,

Ted Munat

A bit later, I received this touching response from Julie Mack, a special ed. supervisor:

It has come to my attention that you were not informed that the District
had proposed 2/19 at 2:00 for the IEP meeting but EEU staff members were
not available during the holiday. The District is proposing 2:00 p.m. on
Tuesday 2/26 at the EEU to hold the IEP meeting. Past emails indicate
Tuesday has appeared promising for Sharkey's family and EEU staff.

I look forward to seeing you,
Julie

Three funny notes:

1)Sharky's teacher and school principal also had not heard about these "proposals." So the district proposed meeting dates, but overlooked the little formality of letting ANY of the other involved parties know about it. Who, then, was being proposed to?

2) Lillie had specifically said that Tuesdays do not work for her, as she has to work and as a registered nurse cannot simply duck out for a few hours.

3) She misspelled Sharky.

We responded by repeating that we did not want them at our IEP meeting, and that we would not meet on that date. We scheduled a time of 2pm on Monday, February 25th, with Sharky's teacher and principal.

The district, in the person of Julie Mack, responded by demanding (through the school staff rather than communicating with us directly) that the time be moved to 4pm on the 25th so their "representative" could be there.

We responded (directly to the district) that this time did not work for us and that we, again, did not want them at our IEP meeting, and we would meet at the agreed upon time of 2pm.

Days went by with no response until Friday the 22nd, when I received a call from Sharky's teacher. Friday afternoons are the district's favorite ambush time, and are particularly strategic for them when it pertains to something happening on the following Monday.

She told me that she had gotten a call from Julie Mack saying that the meeting WOULD be at 4pm, as the district had commanded. When she asked Julie what she should do if we showed up at 2pm, Julie told her that she was not to speak to us without a district representative there.

In the interest of not putting the teacher, who is beloved by all of us, in an awkward position, we decided we'd acquiesce. And to acknowledge this, I sent this little ditty to all parties involved:

We received a call from Angela today explaining to us that the district is insisting upon meeting at 4pm on Monday, February 25th. I have indicated to all of you previously, in writing and with valid reason, that this time poses serious inconveniences to us.

The basic principles of IDEA are available in .pdf format through the Seattle Public Schools web site at http://www.k12.wa.us/specialed/pubdocs/TAP1.pdf . It is highly recommended reading. Page three states "the school district must take steps to ensure that one or both of the student's parents are present at each meeting or are afforded the opportunity to attend. This means (1) notifying the parents of the meeting early enough to ensure that they will have the opportunity to attend; and (2) scheduling the meeting at a mutually agreed upon time and place."

As for point one, I do not consider Friday afternoon early enough notification for a meeting on the following Monday. The only invitation to a meeting we have received was for 2:15 pm on Monday, the time agreed upon by Angela and ourselves. The district has not communicated with us about the time and place of a meeting at all, first scheduling a meeting for the 26th without our input and forgetting to even inform us of such a plan, then communicating demands through the EEU staff.

As for point two, we have stated, in writing and with valid reason, that we do NOT agree upon that time.

Nevertheless, in the interest of lessening the awkwardness of the situation for the EEU staff and completing the Riser process prior to the deadline, we will consent to meet at 4pm. I will just state for the record that making myself available at that time entails significant inconvenience for me, and potentially jeopardizes my good standing at work. I work in the community with adults with disabilities who require supervision, my schedule is tightly packed, and it happens to be one of those jobs where I'm actually held accountable for the level of service I provide.

The other item I want to address is the reason, as I understand it, for forbidding our son's kindergarten teacher from speaking with us without a representative from the district being present. I was told that the Arc of King County informed the district that we had hired lawyers and intended to make a legal case out of this. First of all, this in incorrect. We have not hired a lawyer, we have not spoken with any lawyers, and we have no plans to do so. The only involvement of legal counsel has been on the part of the district, which was done over our strenuous objections and repeated assurances that we were not interested in hiring lawyers.

Second of all, I simply do not have words to describe how disgusted I am that the school district and a local advocacy group are engaging in gossip and innuendo of this sort. It is not the district's place to be talking about us with the Arc and it is certainly not the Arc's right to be disclosing misinformation about us to the district. Frankly, I find it demeaning to even have to address such a travesty.

We will be at the EEU at 4pm Monday to meet with our IEP team and whomever this unnamed district representative happens to be.

OK. Now the first thing I need to do is quickly point out that we have since learned the ARC of King County did not do this. The ARC of King County is an outstanding organization which we are very grateful for. I sent an email to Jodi Reimer at the ARC, which was regrettable snippy, asking her about this, and she assured me they would never disclose such information, as it would be a breach of confidentiality.

And besides, the story ended up changing. Julie Mack showed up to the Monday (at 4pm) meeting and claimed that the ASTAR Center was actually the one who had tipped them off about the fictional lawyers.

The ASTAR center is another wonderful organization, beloved by many families with children with Autism. I sent another email, this one to Katrina Davis, the person I had communications with at ASTAR. This one was (hopefully) less snippy, having learned from my experience with Jodi and now getting the gist of the fact that the district was full of it. She also told me that she had not spoken to the district and that this would be a breach of confidentiality. From my dealing with Katrina, I'd just about die of a heart attack if it turned out that she ever did anything contrary to the interests of families, and the staff at Sharky's school expressed the same sentiment. (By the way, it was Katrina who put us in touch with Paul Nyhan of the Seattle PI, which led to the story in the paper, which led to many of you reading this ungodly long blog post).

So where'd this all come from? Who knows? Maybe the district knew we were talking to the ARC and ASTAR and suspected we'd talked lawyers. Maybe they have a mole out there. Maybe they get their information from the same people who told the Bush administration about all that uranium Iraq was purchasing. I don't know. I'd like to know. But I've got bigger fish to fry.

In the end, we met. Julie Mack was there. No lawyer. Sharky's moms and I, his teacher and assistant teacher, and the school principal also were present. There was no argument, and we hadn't supsected there would be. We knew we were on the same page.

But looking back, we realize the district won that round in a way. Because we never did get to address what went down with Sharky's placement process in 2007. When I told Colleen that our concerns would be pursued through "different avenues," I was referring to a citizen complaint through the Washington State office for the Superintendent of Public Instruction (OSPI), and the Department of Education's Office of Civil Rights (OCR). I have since filed complaints against the district with both of these agencies, but not over what happened in 2007. Rather, it is over what has happened since that meeting (at 4pm) on the 25th of February, and I have learned that they are no longer able to investigate what happened in 2007 because it's been over a year.

What happened in 2007? that will have to wait until some later date.

What has happened since 2/25/08 that caused me to file these complaints? That will come next.

For a parent of a child with a disability, it is absolutely exhausting just to chronicle all the indiscretions of the public school system . Imagine what it's like to actually live it.

But then, I know most of you don't have to imagine it. You've lived it. And our exhaustion is what they are counting on. They know how demanding it is to raise a child such as ours. They know about the sleepless nights, the tantrums, the need to work extra shifts to cover your expenses, the deer-in-the-headlights effect of trying to navigate available services, and the general overwhelming nature of life as a parent to a Sharky or some other such lovely and amazing creature.

And they try to use this to their advantage. First they assume total authority, and tell you how it's going to be, figuring you'll obey. If you sniff around for information or additional services you imagine your child might be entitled to, they start playing the hand behind their back game:

"what's that you've got there?"
(revealing left hand ) "oh nothing"
"in your other hand"
(shifting something from right to left hand, then revealing right hand) "oh nothing."

If you persist, they puff up real big, make random demands in order to assert authority, and try to scare you away with their henchmen (AKA lawyers).

There are a couple of things they don't seem to know about.

One is what I call "the rope theory." When you raise a child with Autism, or other similar condition, you inevitably reach a point where you say "I'm at the end of my rope."

A little while later, you might say "I'm beyond the end of my rope."

A little while later, you might say "I'm so far beyond the end of my rope, I don't even know where my rope is."

A little while later, you might say "Who needs a rope? Certainly not me! ropes are for the weak!"

And once you've found that extra strength, that endurance, that ability to successfully navigate the terrain of this strange yet majestic new world you find yourself in, all the techniques of intimidation and misrepresentation the school district or any other corrupt entity might attempt to reign upon you are simply a minor nuisance.

The other thing they do not seem to know about is just how much we love our children, and how much strength this fills us with, and how fiercely we will fight on their behalf. As I wrote in an email to Sharky's school principal, in which I was apologizing in advance to her for the fight I was about to stage with the district on the grounds of her lovely school:

I realize...that this is likely a losing battle I am going to fight. But my hope is that other benefits for us and for other families will come about as a result. Additionally, I liken the system as it is currently constructed and implemented to a predatory animal. If I were walking with Sharky in the woods and a wild animal leaped out at him and attacked him, I would do everything in my power to drive that animal away, even if I knew it was a futile effort. And this is the approach I intend to take with the school district.

Coming up next: the many many colorful things that went on from February 25th, 2008, to the present day..including the woeful tale of "The Great Displacement," my formal complaints, and our individual (but not collective), victory.

Sound Bites From The Shark: Weekend Roundup

2008-06-03T12:29:00.000-07:00

An ongoing assortment of the memorable things uttered by Sharky....

On Saturday morning we walked by a martial arts school where a large group of children, about Sharky's age, were in line, spinning and kicking, in unison to the orders of their instructor. Sharky stopped and watched with fascination. We have talked about putting him in such a class, so I asked him if he would like to be in a class like that some time:

Sharky: Well...no.
Me: You wouldn't?
Sharky: Well...because my friends in class might kill me, and that would hurt a lot.

Sharky takes his "Dr. Doom" doll and makes him strike the Spiderman figure I am holding.

Me (as Spiderman): Ahhh, that hurt Dr. Doom.
Sharky (as Dr. Doom): Sorry...(shrugs shoulders) I'm evil.

Sharky says goodbye to his grandfather, but at first declines to give him a hug. When his grandfather pretends to cry, Sharky comes over and gives him a hug. He then pats the shoulder of grampa (who has long white hair and a big bushy white beard), and says in a consolatory tone:

"You were a very good Santa Claus today."

More to come soon on our dalliances with the Seattle school district, or The Battle in Seattle as it is commonly known.

Why Sports Promotions are Insulting

2008-05-30T07:39:00.000-07:00

In reading this week's e-bulletin from Autism Speaks, I see that "Frozen Ropes of Long Island, a premier baseball and softball training academy, and WFAN, the New York Mets radio station, are supporting Autism Speaks through a unique promotion, 'Strikeouts for Autism.' Every time a Mets pitcher strikes out a batter for the rest of the season, Frozen Ropes will donate $25 to Autism Speaks. WFAN will announce the totals at the end of the broadcast of each game and invite people to visit the Autism Speaks web site for more information."

This makes great PR for Frozen Ropes, WFAN, and the New York Mets. And it essentially boils down to these entities exploiting Autism and those afflicted with it - with minimal investment of money, time, or care - for their own gain.

Let's break down the numbers. This Sunday, Johan Santana is the scheduled starting pitcher for the Mets. Johan Santana makes $16,984,216.00 in salary this year. Through eleven starts, he has averaged just under six strikeouts per outing. Therefore, if he meets his average for the season, Autism Speaks stands to earn $150, and possibly a little extra from people referred to the site by WFAN.

Meanwhile, Santana, regardless of his performance or strikeout total, is guaranteed to earn $104,840.84. This is his average salary per game over a 162 game season. Given that he will at most appear in 36 games this season, it could be argued that he is paid $471,783.78 per appearance.

Santana would therefore have to strike out 18,871 LA Dodgers that day to earn as much for Autism as he earns for throwing the ball.

The record for strikeouts in a career is held by Nolan Ryan, who struck out 5,714 over a span of 27 seasons. Earning a rate of $25/strikeout, Ryan would have had to continue his established rate of strikeouts for a total of 89 seasons in order to strike out enough batters to earn as much for Autism as Santana will earn this Sunday.

And that is not even to mention the earnings of Santana's employer, billionaire chairman of Sterling Equities Fred Wilpon, who purchased the Mets for $391 million and will dole out $121 million in player salary while still turning a profit of millions this coming season. Or of WFAN and their parent company, CBS, which reported $3.7 billion in revenue during the first quarter of 2008.

In the aftermath of Hurricane Katrina, New York Knicks guard Stephon Marbury openly wept with grief on national television, expressing between sobs the empathy he felt for the children of New Orleans, imagining what it would be like should anything so horrific befall his own children. He pledged, and delivered, $1 Million to relief funds. It is impossible to say how much his emotion inspired others to contribute, or at the very least, care.

Joe Horn, then of the New Orleans Saints, was in the Superdome during the aftermath of the Hurricane: providing hands-on assistance to the sick and dying, attempting to encourage and lift the spirits of those around him, and speaking loudly to the press at every opportunity to tell the world what was going on and challenge the government to take action.

Serena Williams suggested that maybe she would donate $50 for each ace she served in her next tennis tournament...

The world collectively groaned and rolled their eyes. After all, how could she be so out of touch with the drastic nature of the situation, and not recognize the need for more concerted action?

I will not attempt to compare Autism to Katrina, other than to say that clearly the world is not grasping the urgency or the degree of concern that Autism requires at this time.

The largest Autism awareness organization in the country is happy to promote an enterprise in which millionaires play ball games for billionaires and toss a few crumbs to our children with Autism, as if they are trained seals begging along the foul lines. The rest of the nation watches the show and applauds. Most go home. A few visit the Autism Speaks site and donate. Society marches on unaffected.

I'd like to propose that the next time our local sports teams host an "Autism Awareness Night," we make it a night of true awareness, encouraging those who arrive at the park to do the following:

Calculate the amount of time and money you spend each year on sports. Decide on a percentage of that money and - more importantly - time you could instead donate to Autism.
Use your new free time to volunteer at a local school or non-profit organization servicing people with Autism.
If you know someone with Autism, see if there is a respectful way you can contribute to that person's life, whether it be as a friend, advocate, or caregiver.
If you know a family with a child or adult dependent with Autism, reach out to that family. Most people cannot fathom the degree to which families feel ostracized from their community.
If you own a business or are in a decision-making position for one, or if you have the ear of a decision-maker, work to find a way to include a person with Autism in your workforce. Being a part of such a community can provide immeasurable quality to a person with Autism's life, and also provide his or her coworkers with more "awareness" than any night at the ballpark.
And of course there is always the obligatory stuff about writing or calling politicians and telling them to support more paid social services for individuals with Autism and to mandate insurance companies to pay for Autism-related services such as ABA therapy.

Promotions such as "Strikeouts for Autism" lead us down a rabbit hole: a place where fans, players, franchise owners, broadcasters, and media conglomerates alike can pat themselves on the back for their participation in a cause.

The fans feel good about supporting their team when they hear about the team's charitable activities, which permits them to enjoy their time at the park or in front of the TV with clean conscience.

The players feel good that they have a convenient method for giving back to the community, one which poses no threat to their odd position as global icons, and unfathomably wealthy celebrities.

The franchise owners sleep better at night, and have more fodder for staking claims that they are an important part of the fabric of the community, which always comes in handy when it's time to demand a new publicly-funded facility.

The broadcasters get to feel warm and fuzzy inside as they list off the latest totals, and employ their finely honed skills of elocution to inspire huzzahs over it.

The media conglomerates purchase always-valuable good faith from the public, in exchange for the same cash outlay they spend on paper clips in a day.

It is a tidy little circle of sanctimony and self-congratulation, one that benefits many.

Unfortunately, and somewhat inconveniently, it is a circle that excludes those for whom it claims to exist in the first place.

My message to WFAN, CBS, the Wilpons, Mets, and others who like to engage in these sorts of stunts: Thanks, but no thanks.

Shark-Filled Waters Two: Entering the Belly of the Beast

2008-05-26T19:43:00.000-07:00

Previously, I wrote about the long and drawn out process of getting Sharky evaluated by Seattle Public Schools (SPS), a process that lasted well into the beginning of the school year, thus ensuring that his transition into the classroom would come in the form of him being "the new kid," joining midstream, behind from day one.

Sharky was eventually seen in late October. A team of therapists and child development specialists evaluated him and found that he qualified for special education services in a number of areas.

First and foremost was the area of social skills. Sharky had a very social nature, they felt, but little idea how to socialize appropriately or how to initiate and maintain social interactions.

They told us that it was essential to get him into a classroom environment where he would be with peers who were typically developing, and also students with disabilities who were at a more advanced level than he in social skills. This would place him in a position to model positive behaviors.

Conversely, they urged us to keep him out of environments where he would be with children with limited social skills, and to avoid extensive interaction with students who exhibited stereotypical Autistic behaviors. An environment such as this, they explained, would cause him to pick up unwanted behaviors and to regress.

Given Sharky's relatively high level of functioning, and his proclivity towards socialization, they felt there was an excellent chance he could be "mainstreamed" ( a term that to this day terrifies me) and enter into general education within a couple of years. Getting him into an educational program as they described, along with a comprehensive program of private therapy, was essential to this goal, and should begin immediately, they told us.

The next step involved the district.

They referred us to two schools. The characteristic of these schools that appealed to the district was closeness to Sharky's mother's home, which is where he spends the majority of his school week.

We toured these schools and met with their staff. The first one had a group of very beautiful little children, who ranged from the severely disabled to the medically fragile. There was not a single student in the class that day who could speak. The attention of the staff was devoted mostly to assisting students attempting to walk along parallel bars or take off a coat.

The second classroom we went to was slightly closer to what we had envisioned, but still no verbal students. Sharky found one boy who was friendly enough. They chased each other around the play area in silence.

We asked the teacher if they had any typically developing students. They did not. He was a very nice man. My recollections of our conversation - in which we listed the characteristics we had been told were essential to Sharky's well-being and asked if they were present in his classroom - are mostly images of him shrugging and wincing sympathetically.

We were wondering why SPS was wasting our time, and I think he wondered the same, though perhaps he had a slightly more educated guess than we.

I reported back to the consulting teacher with SPS that we were not at all happy with the options that had been presented, and asked that she provide more. She said she would bring up my concerns at a meeting the Special Education department was having in a few days.

After that meeting, she sent me an email to inform me that after discussing my concerns, they had come back with the same two school references, and we would have to choose between one of them. At that, I informed her that we had no intention of sending him to either of those classrooms, as according to the advice of their own evaluation team, the environments each class provided would do more harm than good.

A bit later, she contacted me to say that even though we were not intending to enroll Sharky, the district was required to extend an offer of services, and could I please meet with her and the teacher of the second school we visited to sign off on some forms stating that they had.

For the life of me I have no idea as I sit here typing this how I could have been so foolish as to agree to this. I suppose at the time, despite my innate skepticism when it come to bureaucracies and the poor form SPS had shown thus far, I was naive as to what true scoundrels they actually are.

I met with the consulting teacher and the teacher of shrugs and winces we had met before . We skimmed over an IEP - the first time I had seen one - and in the end I signed off saying that I agreed with the needs and goals outlined but disagreed with the placement. I came to find out later that what I had in essence done was to decline services, therefore relinquishing the district from legal responsibility for the months that ensued in which Sharky was not in school.

I will halt the narrative of the story for now, but will leave off on this note: At one of many contentious IEP meetings over the ensuing months, when we argued with SPS that the placement referrals they had made for Sharky were irresponsible, not in keeping with what their evaluation team had recommended, and not at all what was best for Sharky, a consulting teacher responded:

"Unfortunately we're not required to provide the best setting, only the appropriate one."

Let's dissect that statement for a moment, shall we?

First of all..."unfortunately"?

Who is this unfortunate for? The syntax of her statement would lead you to believe that SPS feels it is unfortunate, as if SPS wishes it could provide what is "best" for our children, but, darn it, it can't because it's not required of it to do so. Apparently SPS is paralyzed, suffering from locked in syndrome, wishing for all sorts of beatific fantasies but required by some unspoken law to not provide a smidgen more than what it requires itself to provide.

This is the imploding "logic" of the district with which we have to work. This is the utter insanity with which we must familiarize ourselves, to the point where we can recite it and interpret it, while at the same time not allowing it to consume us. We must decipher the corrupt language of the child-crushing bureaucracy well enough to use it to defend the child it seeks to crush. But we must also maintain a clear vision of the peaceful, compassionate way in which we want to communicate with our children. These are two very different forms of communication, and we must be adept at both, sometimes switching between the two within moments of each other, sometimes engaging in both simultaneously.

It is difficult. But one look across the IEP table, into the sad and half-crazed eyes of those with the district who have accepted the bureaucratic logic as sooth, for whom this image of the world is gospel, provides all the motivation we need to rise above. There, before us, lies a piercing vision of what we might become should we allow ourselves to be dragged down into this mire.

And thank god for our children for supplying us with the incentive, wisdom, and love to save us from such a fate.

Soundbites from the Shark Part 1: In which the hero reflects on exiting the womb.

2008-05-25T09:12:00.000-07:00

People have often told me to write down the various funny, wise, or interesting things Sharky says. So I figure a blog is as good a place as any to jot these down. They come on at least a daily basis. Already today he came up with one while showing a picture of one of his friends to his cousin Alex:

Sharky: Look Alex, it's (Jeremy)

Me: Alex doesn't know who Jeremy is Sharky. You have to tell her. Who is Jeremy, Sharky?

Sharky: Ummm...He's a screamer.

But the story I really wanted to commit to print came about a week ago. Sharky was looking at pictures from the day he was born. He noted that we were in the hospital and there were doctors, and I sensed he was worrying that his being born was somehow associated with illness. I explained how some doctors aren't for sick people, but to help babies to be born.

Sharky said that the doctor helped get him out of daddy's tummy. I told him he was in mama's tummy, and he said "yeah, and daddy's tummy too!" I suppose he imagines our shared custody arrangement was in place even before birth.

Then I said, "and when you came out of mama's tummy, you said, 'ahhhh!ahhhh! I'm cold! It's too bright! Ahhhh!' And I held onto you and I said, 'It's OK buddy, I got you, I got you, you're all right.'"

Sharky looked at me in stunned silence. He turned around and ate some grapes quietly for a while.

A few minutes later, he walked over to me and placed his hand on my shoulder, and said,"Daddy, I so sorry I have to miss my mama's tummy...It was just too cold in there...yeah, too cold."

This exchange illustrates for me a typical understanding reached between Sharky and I, and probably for lots of parents and their children with autism. The details are somewhat skewed and the understanding may not be literal, traditional, or linear. However, there is an understanding, possibly a deeper one, that always seems to grope the sides of some elegant form of truth.

And I hereby publicly forgive my son for leaving his mother's womb. After all, we know how cold wombs can get in July.

shark filled waters: let's cut to the chase

2008-05-20T19:47:00.001-07:00

Thank you again to all who have been reading and commenting, and I hope you do not find me ungracious for not responding individually to these comments on a regular basis. I dream of a day when I will have time. But I assure you all I do read them and cherish them.

I want to start the slow, agonizing process of detailing what we have experienced with the Seattle school district from the time we first called them with concerns about Sharky's development. It's not a very happy story.

It was May of 2006 that Lillie took the step of calling the "Child Find" people of Seattle Public Schools (SPS). We were told that we were too late for an evaluation this school year, and it would be done in the fall. This seemed unfortunate to us, as we would have liked for him to have been evaluated in time to begin school in the fall.

September came and proceeded to go, and no word came. We called, and were told that the evaluation staff were swamped with work, it being the beginning of the year and they having been gone so long.

It seemed immediately preposterous to me that schools would not have 12 month contracts with evaluation staff for special education. After all, the summer seems like the perfect time to meet with children not yet in school with suspected disabilities to assess where they should go to school in the fall.

But at the time I was still of the mindset that the district, and the people that worked for it, were our friends and allies. They were merely constrained by budget. It was the fault of the military budget, the diversion of tax dollars to building stadiums for sports teams, and the general misplaced priorities of our culture that were to blame.

These days, I still believe that the military budget, the diversion of funds to sports stadiums, and the misplaced priorities of our culture are problems directly impacting children with disabilities and the vast scores of other people who are in need of some sort of assistance. But I have come to realize one very important thing: the school district is NOT our friend or our ally. They are not a progressive-minded entity doing all they can for us and our children, empathizing with our struggles and frustrations and helping us to find creative ways to work around the limitations of the system.

Rather, they are more of an enforcement wing of the greater system of neglect. They are a police force, barking at us to take what has been offered, be grateful for it, and don't dare ask for more.

Our society neglects its children, and especially the children deemed to have "special needs," or "challenges," or "barriers to learning," or "disabilities," or as SPS chooses to call them, "students with IEPs."

Naturally, the parents who love their children, as I love Sharky, raise objections. In raising these objections, inadvertently or not, we attempt to skewer this giant, filthy, stinking system of neglect.

We, as parents of children with the myriad of hurtful labels, have access to a portal, through which we can potentially alter the priorities of our society for the better. In other words, we can use the vantage point and the passion that our love for our children provides us to demand change.

The entity that stands immediately before us is the school system. The school district is here to guard and protect the larger system against those who would question it. When we challenge the authority of the school system, the school system responds with the intensity of an entity not only trying to protect itself, but also to protect its master. And it is a finely honed weapon.

The aforementioned system of neglect is a system that has no use for children, for beauty, for art, for poetry, for happiness, or anything that does not present itself as immediately exploitable for monetary profit. It is a system that has no use for nature, except for how it might exploit it for monetary gain.

And as such, we have an educational system with no other purpose but to mold children into adults who will be able to fuel that same system for monetary gain.

Our children, the ones with "disabilities," the ones whom we love so much, the ones who have so many beautiful gifts and imbue our lives with such immeasurable grace and love and beauty....do not have the qualifications to sufficiently feed this system at the same rate as those without "disabilities." They are therefore substandard in the eyes of the system.

It has only been through the tireless work of activists that the system has begrudgingly afforded us certain rights, and allowed laws to pass that ensure our children of certain educational opportunities.

What I do, in demanding fair treatment for my child, I see as a continuation of a greater struggle for human rights. My fight is born out of my love for my child, but it is not done only for his benefit. There are certain types of love that immediately explode into the universal realm, wherein the love you feel empowers you to feel compassion and love for everything, and suddenly you discover a well of strength right in the center of yourself that you had no idea existed. And you feel nothing but optimism, because it seems only logical that if this love can exist, anything else you ever imagined and hoped for must be able to exist as well.

I told you this would be a slow and agonizing process, and it is one I have no intent to speed up. We haven't even gotten to the part where Sharky enters the system yet, and I, for one, am done for the evening.

Thank you for reading.

Portraits of the Shark as a Young Man: Mary Poppins

2008-05-13T18:41:00.000-07:00

I have been overwhelmed by the response this blog has received, both quantitatively and qualitatively. And as a result I feel anxious to keep up with my writing and keep this momentum gathering.

However, sometimes I actually need to be a parent to the subject of this blog. And I feel a bit odd saying, when Sharky asks me to play, "not now son, I'm trying to share your story with the world!"

Another issue (and this one far less desirable) is that much of my free time, my writing energy, and the daily allowance of time my eyes can bear gazing intensely into a computer screen are usurped by the need to write letters of protest regarding the Seattle Public School District.

Specifically, Sharky is one of several dozen special education students who, somehow or another, ended up with NO school placement for next year. As a result, and despite the very gracious form letter I got from the district 4 weeks after expecting to hear about our placement saying they do intend to eventually stick him somewhere, I filed a Citizen's Complaint with the Washington State Office for the Superintendent of Public Instruction (OSPI), who did indeed decide to launch an investigation.

Over the weekend I received a copy of the district's response, in which they claim that the investigation should be called off because my complaint is "premature." Premature because they are still in the process of taking steps to "accommodate a systemic capacity issue."

OH! Here I thought they completely botched the whole thing and ended up with six fewer special education classrooms than they needed, and as a result brought untold pain and anxiety upon dozens of families. Turns out it's just a systemic capacity issue. Yeah, those systemic capacity issues sure are a bother, aren't they? But like the rain in Seattle or tornadoes in Kansas, they're just one of those natural things we have to learn to live with.

(By the way, I called my doctor and asked if a systemic capacity issue was similar to a systemic yeast infection. She hung up the phone on me)

So time I'd hope to devote to this blog went towards scripting my response. There is much more to come about this and many other subjects pertaining to "The District," as they refer to themselves in every letter written by their legal counsel.

But today, lacking the spirit to write something new, and still wanting to speak about happier things, I will share a story from the past, which I had the good sense to write years ago for use on some rainy day such as this.

My father had a stroke when Sharky was almost a year old. In the aftermath of that, it came to light that he had Lewy Body Dementia. He has since that time lived in a nursing home. One of his great joys during this stage of his life has been to watch Sharky grow, and Sharky has always been very good to his grandpa (much more on this subject in the future as well).

Another source of pleasure for my father is when my mother reads emails or letters to him about things going on with their loved ones. Knowing this, I made it a point to regularly write descriptive emails to the two of them about experiences Sharky and I had. What follows is one of those, written in April of 2005.

Hi.

I wanted to write and tell you both about our fun Sunday afternoon going to see Mary Poppins at the historic Capitol Theater in downtown Olympia.

I spotted the flier at the Olympia Library last week saying that Mary Poppins would play, and folks were encouraged to dress up and sing along. As you may know, Mary Poppins is possibly Sharky's favorite movie of all time (of course, “of all time” is a much more limited concept when you are not even three years old yet), and he can sing and dance most of the musical routines in it. So we spent a week in anticipation of the event. I was very excited to be a witness to his first experience at a movie theater. And I was glad it would be at the Capitol Theater, a beautiful, old-fashioned theater with a stage and balcony, and ornate fixtures, and velvet curtains, instead of some mall cinema crusted in popcorn and $20/gallon soda.

There was a line around the block. Sharky got tired of waiting so he and I went into the alley behind the theater and splashed in puddles. When we returned, Lillie was near the front of the line and had been joined by Jean, one of our babysitters. Sharky loves Jean, but when he saw her a look of terror came over his face, and he ran into my arms and made me hold him. I realized that he is used to Jean’s presence meaning Mama or Daddy is leaving, and he wasn’t ready for that. Not here. Not now.

Lillie had dressed him up as Michael Banks, the boy child that Mary Poppins nannies. He was wearing a yellow sweater vest with argyle across the middle, knee-length blue shorts (or knickers) and green stockings under them. We went into the theater and found an open row of seats near the back. But it ceased to be the back a few minutes later when the staff realized they were going to have a full house and pulled back the curtain behind us, opening up the last 12 or so rows of the theater. Sharky took his own seat and sat upright near the front of it, his little legs dangling off the edge. He sucked on his sippy cup of juice and looked all around in wide-eyed amazement. He pointed at the red lights along the side of the theater and said “oooooooh.” He looked up at the ceiling fans and bounced up and down with excitement. He pointed at the screen and asked, “Whuddat?”

Then he decided it was time to get up and run around.

We ran up the stairs to the lounge area, across the top floor, then down the other stairs to the lobby. Then across the lobby, then up the stairs, across the lounge, down the stairs, across the lobby…into the theater, over to our seats just to check and make sure Mama was still there, then back into the lobby, up the stairs, across the lounge, down the stairs, across the lobby.

Finally, after much ballyhoo, the movie started. Sharky was running across the lobby, closely followed by me, when he heard the opening strings of the Mary Poppins Overture. He froze in his tracks, looked all around, screamed, “Whuddat?!”

We booked into the theater, found our seats, and watched. Sharky screamed at the exact moment when anyone in the movie became animated. He barked just as the dog in the film began to bark. He kicked the chair in front of him in time with Dick van Dyke kicking the drum pedals to his musical ensemble. He sang along with all of the songs. The woman in front of us, who was alone, about 45, and also knew the songs and sang, kept turning around and laughing each time Sharky had a burst. She asked him, “have you seen this movie before?”

Only about 1000 times.

And the experience was everything I dreamed it would be. I sat back and enjoyed the pure amazement of a child seeing the magic of a movie spectacular shown on the big screen. I remembered very vividly what it was like for me when I was introduced to the same thing.

And I really must say that Mary Poppins is an incredible movie. You really have to see it on the big screen to appreciate that. It may be one of the great movies of all time. It is such a joyous spectacle, and I really have difficulty finding any flaw with it.

There was an intermission.

Curse the intermission.

The trance was broken, and after sitting for an hour straight soaking up the film, Sharky decided it was time to raise hell. In addition to the running around the outside lobby, he decided to run up and down the aisles of the theater screaming, and then running out of the theater, throwing open the curtains and letting a flood of light into the theater. Over and over again. Attempts to redirect were ignored. Attempts to squash were met with extreme tantrums. As I staggered dazedly behind him, I seem to recall admiring adults saying things such as “a better show than the movie,” and “he has a future in entertainment.”

Eventually, he noticed that a large group of children had formed on the steps leading to the stage in front of the screen. He went and stood amongst them and danced to the music. Near him, there was a boy of about 10 dressed as a chimney sweep. He was dancing also, but in a more self-conscious way. I thought, this is the difference between 2 and 10. At 2, there is still the ability to be completely unadulterated in your expression. You can dance and sing for the pure joy of it. But by 10, you perform for others, hoping for approval. If you play your cards right, you can eventually regain the purity of a 2 year old, but it takes years of effort, awkwardness, and embarrassments to get there.

As I was thinking this, the ten-year-old crashed into Sharky, knocked him over, and then fell on top of him. It was 100% the 10-year-old’s fault. To his credit, he was very sweet and apologetic. Lillie and I whisked the screaming Shark away to a sort of broom closet near the front of the theater and consoled him.

As we were doing this, I heard from inside the theater that “Step In Time” had begun.

This is Sharky's favorite.

This is the reason we had come.

And I’ll be damned if some clumsy 10 year old going though an awkward yet necessary life stage was going to stop us from enjoying it. We went back to the front of the stage and danced. Lillie was holding Sharky and bouncing him.

IT WORKED! He stopped crying and started bouncing and singing along to the song. After a bit, he squirmed from Lillie's arms and onto his own feet. He was back to himself, dancing and singing.

Once the song ended, he decided it was time to run all over the theater again, so we decided it was time to leave (it was almost the end of the movie anyway). He didn’t take too kindly to that notion, and we had out last great tantrum of the day.

Once out in the light, I saw that his hair was soaked with sweat, his face dirty with theater soot stuck to the tears he had shed, his little British boy clothes were stretched and pulled to their limits, his eyes were red and cheeks were flushed.

I was hunched over from back pain and pretty sweaty myself, ducking Sharky's flailing feet as he tried to kick his way free.

Lillie's eyes sagged and she took deep breaths though her mouth, as if the nose was too narrow of a passage to meet her current oxygen requirements.

We hoisted Sharky, still whimpering, into his car seat, and plied him with a piece of zucchini bread to pacify him. It worked. I managed to lift an arm half way up my side to signal goodbye to Lillie. Then I turned to Sharky and said,

“I sure had a lot of fun today, and I’m glad you did too. I’ll never forget your first ever trip to the movies, when we all saw Mary Poppins together…you made it a very memorable experience.”

He smiled and they drove away.

Love
Ted

Little God Lead Poison and the blood tests

2008-05-08T22:33:00.001-07:00

Our first inclination that something was amiss with Sharky was when he was two years old. I got out of work and got a voice mail from Lillie in tears, saying she had gotten back results of a test that showed astronomically high levels of lead, mercury, and other heavy metals.

The test had been done by a man, whose name I forget, who was both a practitioner of natural medicine and a licensed Physician's Assistant (PA). He had his own practice in Tumwater, a small town just south of Olympia. He performed a test in which he took a small snip of Sharky's hair and analyzed it. Everything that should be low was high and everything that should be high was low. Everything that should be in the middle was not, and nothing was in the middle. It was a graph of utmost extremes.

We were alarmed and yet totally unsure what to make of all this. What did all these graphs mean? Was this legit? Who the hell was this guy, and why did he treat us like subhuman scum?

A bit later, our naturopathic physician, who was beloved by us and trusted completely, told us that while this man lacked bedside manner he did, in fact, know his (kaka).

We took Sharky to a clinic to have blood drawn.

Let me please pause dramatically at this point.

Then let me repeat:

We took Sharky to a clinic to have blood drawn.

The boy put up a struggle unlike anything any of us, including the blood drawer, had ever seen. Three people restraining, one person (me) talking to him to keep him calm. Another person (Lillie) both restraining and whispering sweet nothings.

Years earlier, I had taken my beloved cat Artemis to the vet to be treated for ear mites. As the vet swabbed medicines into the ear of the cat, Artemis let out soul shattering shrieks that seemed to take on new levels of depravity with each passing moment. She discovered new depths of despair with each swab, until she seemed to be channeling some eternal feline sorrow that existed in a dormant state for all time and space, but was only occasionally tapped into.

As I was taking Artemis away, I looked at the vet and was impressed by the fact that she had a slight glisten of a tear in the corner of her eye and a modest tremble in her hands. My kitty had gotten to her!

The rage of Artemis was a Saturday morning cartoon compared to what the Shark unleashed upon the universe that day.

Gutteral screams. Thrashing. Banshee-like howling.

And this was just over being made to lie down. The needle hadn't even come out yet.

I never saw the women who helped strap him down and extract a teaspoon of blood from his arm again. But I have to imagine they have since moved on to other occupations. Perhaps veterinary medicine.

And the end result was that Sharky scored a 2 on the blood lead level scale, which is well below the alarm rate. But this does not diminish the significance of his out-of-whack readings from the rude PA guy in Tumwater. It's been covered that kids with autism have toxicity issues.

Later, Sharky and Lillie both did a program through our Naturopath that involved lots of green stuff and collecting pee in large jars in the fridge. This pee was then sent to a lab, which found that both of them were excreting lots of nasty stuff, the same type of stuff the PA from Tumwater said he found in Sharky's hair.

I couldn't wrap my mind around all the specifics at all. So I did what I know how to do. I wrote a poem.

Years later, Sharky was included in a photographic essay by Woodinville-based photographer Charles Cotugno called Stories of Autism. Charles asked the parents of the children to include a short essay on how they felt about their child's autism or how the autism had affected their lives. Even though our "understanding" of Sharky's state of being had changed quite a bit since the days of jar pee, I still felt as though the poem did a better job of expressing my feelings than any paragraph I could conjure up for the photo on its own. Charles ran the poem as is.

Here 'tis

little god lead poison

little boy born
to a poisoned greeting
throws the universe miles
takes seven steps back
proclaims himself master of heaven and earth

flaps his arms, takes flight
yet stays locked
in his own condition beyond our recognition
in a world of his own
babbling
withonlywordsandactsofpeace
as protection

he,
is for wonderful humanhood

he,
reminiscing on his view of the earth,
has given us real hope for the future

don't start hurting feelings
of little god lead poison
build us a tower
to little god lead poison
to this small, forlorn, beautiful creature

and no one will resist falling in love with him

and everyone will want to protect him.

http://www.storiesofautism.com/main.php

Sharky Hits the Big Time

2008-05-06T14:13:00.000-07:00

Thank you to Paul Nyhan (writer) and Dan DeLong (photographer) for their work in creating the recent article about Sharky and his posse in Monday's Seattle Post-Intelligencer. Paul and Dan are two great guys, who treated Sharky and the rest of us with utmost respect. We all enjoyed having them in our lives during this process.

Thank you also to all the people who have expressed support and good wishes, either through comments on this blog, comments on the PI forum, emails to me, or emails to Paul. It's been exciting to hear from you all.

I'm very happy with the article. But it is important to understand that no article can portray the complete picture of a family, and I hope readers understand that our lives are not just about the frustrations and anxiety that come from Sharky's autism. I personally feel extraordinarily fortunate to have what I have in life, and there is no doubt that my life is imbued with an inordinate amount of joy and happiness, and much of this is directly the result of Sharky.

About a year ago, Sharky and I were walking from my car to my apartment, which was in Lower Queen Anne at the time. We had been listening to a favorite song of Sharky's in the car, "Machengoidi" by Ali Farka Toure. As we were standing on the corner of 1st and Mercer, waiting for the light to change, Sharky was singing the song. I looked at the people around me - the business man with briefcase, the elderly woman returning home with her groceries, the young woman in torn jeans and t-shirt - all of them alone, looking strained by the weight of the world.

And suddenly a thought rushed over me, one of those thoughts that hits you with full force to the entire body. I thought, "What did I do to be so lucky, to get to be the one out of all of these people around me, to have this beautiful little person to hold my hand and sing me beautiful songs as I go through my life?"

And this is far from a fleeting thought that comes from time to time. It's how I typically feel about things.

So as long as I am able to keep this blog going, it will never be a platform for despair or bitterness. This is a blog about expressing gratitude. It is also about bringing to light the deficiencies in our school systems' and governments' services, and the ongoing difficulties they cause us (or at least it will be if I ever get through the gushing part). But this will be covered not out of bitterness or cynicism, but instead with the goal of changing these things for the better.

So again, thanks to all. I'm happy to have you all here and hope at least some of you will check back in from time to time.

Points of Order: Declarations of Love, Part Two

2008-05-04T22:30:00.000-07:00

In the last post, we reflected on births, specifically that of Sharky, and the effect it had upon me. Let's skip ahead three years now, and think about departures. Here is a letter I wrote to Sharky the day he moved to Seattle.

August 1, 2005

Today was a very special and very painful day. Today was the day that you would leave for Seattle to live with your mom in your new home on Capitol Hill. I think that it’s a good idea for you to make this move, and I will make the move along with you once my lease in Olympia is up. In the mean time, I will see you almost every weekend, and we will spend the whole weekend together when we see each other. But still it’s very hard for me to see you go.

Do you wonder why that’s hard, when I will still see you all the time anyway, and will be back living near you in a few months? Well, I wonder why too, and I think after wondering why I have a few explanations.

One is that this town, Olympia, has been your home and mine for as long as you have been alive. When I walk around town, I see places that we have spent times together, and had fun, that we will probably never go to together again. Just today, I walked through the area of Capitol Boulevard and Union. This is near where you and your mom used to live. I would take you for walks in your stroller through that area when you were very little. We would go to Wagner’s Bakery and get a muffin and share it. We’d walk around and look at the nice houses in that neighborhood, and sometimes I would wish I had enough money to buy one of those houses for us to live in. It is a big change. I think change is good, and I think this change is good for you and for me, but it’s still hard to let go of happy things, like living in Olympia with you.

Another thing that makes me sad is that I worry about you. I worry that this big change will be very hard for you, and I will be so far away that I can’t help you with it as much as I want to. I know you are a very tough little boy, and you are always OK, and that your mom will take good care of you. But because I am your father, I feel very protective of you and I want to personally ensure that you are OK. I worry that you are in a big city now and there are more dangers there, and I am not there to protect you. I am listening to a song right now, with lyrics that go like this…

“yellow hair…you are such a funny bear…it’s so hard to be in the city, because you want to say ‘hey’ to everybody.”

I wonder if you will want to say “hey” to everybody in the city.

I also feel sad because we have been spending so much time together lately, and now you are gone. I feel like a part of me is missing (I even wonder sometimes if the sadness I feel is from you being gone, or if I am just feeling the world’s sadness because you are not there to protect me from it anymore…do you understand?). I feel like you can’t possibly understand why I am not with you anymore. I know you will go on, being brave, living life and enjoying yourself. But I worry that you are having fun despite your worries. I don’t want you to do that, I want you to not have any worries. I know that isn’t realistic, but that is what I want for you.

This morning, I woke up very early with a very heavy heart because I knew it was going to be very hard to say goodbye to you. I almost just got up and left you sleeping with Lela, so I wouldn’t have to say goodbye and maybe you would be less sad if you woke up and I was gone instead of having to watch me leave. I went into the kitchen to mix a cup of juice for you or Lela to give you when you woke up, and I heard you crying. You came walking out of the bedroom as I was walking from the kitchen to see what was wrong. You had woken up and were sad because you didn’t see me in bed next to you. I comforted you and came back to bed. You settled down and then started to play. We got up and got dressed. I told you that I was going to take you to see Terry and you started to cry. You asked for mama, and for grandma. I told you that you would stay with Terry for a little while until your mama came to pick you up. You sobbed, “ok” and then you cheered up. I was happy you felt better, but I knew that what you understood was that you were going to see mama, not that you would have to be left with Terry first. I made you some toast and we got in the car. You were smiling and singing along to Ernie and Bert, and munching on your toast. You were so happy, and I felt very guilty because I knew I was about to do something that would make you sad.

We were early, so we stopped at Bagel Brothers and got a bagel and a coffee. I figured I’d eat half of the bagel and drink the coffee for my own breakfast, then save the rest of the bagel for you to eat while you were with Terry.

We drove to Terry’s house, which is right next door to the house you and your mama were moving out of. Terry wasn’t home. I called her and she said they were at the store and on their way home. You squirmed from my arms and ran away from Terry’s over to your house. Except it wasn’t your house anymore. We went inside and everything was gone. You went upstairs to the place where your TV was, and you said “Uh-Oh, where TV?” I tried to put on a brave face, and tell you how exciting it was that you were going to have new place to play, and that your mama had taken everything to this great new place so you could have fun playing there together, and she would be back soon to take you to the wonderful new place. But you are three years old, and those words don’t make much sense to you.

Terry came home, and I carried you over to her place. You knew where you were going, and you didn’t want to go. So I had to clutch onto you very hard to keep you from running away. I handed you to Terry and she carried you inside. I walked over to the doorway and waved goodbye to you, and told you everything was OK and mama would be there soon. You were red in the face, crying and screaming. You begged me not to leave and reached your little hand out to me. I had to wave goodbye and close the door. I knew the sooner I left the sooner you would start to get used to your new surroundings and have some fun.

I felt a strange feeling wash over me as I walked to my car, like I was going to fall over or collapse. I felt like all of the life was flooding out of me. I drove out of the parking lot quickly and found a spot off the road to pull over. I started to cry very hard. I felt alone, so I called Lela on the phone. When she answered, I couldn’t even speak, I just cried into the phone.

After a few minutes, I calmed down a bit and took some deep breaths. I got off the phone with Lela and then called your mama. I left her a message asking her to please hurry up and go get you, and to please call me when she had you so I knew you weren’t unhappy anymore. I also told her I would like to come see you this Saturday morning. I needed to have a set date and time when I knew for sure I would see you again.

Then I went to work.

I was scared to go to work because I felt so sad, but it kind of cheered me up. I went with a client of mine to his first day of work, and he was so happy to be at his job that it made me happy. Later, I was helping another client with his job. He noticed I was feeling down, and asked me if I was tired. I said, “Yes, I’m very tired today.” And he said, “I’m sorry you’re tired.” I thought that was very sweet.

I spoke with your mom later and we decided I would come get you on Friday evening, and we will spend the whole weekend together! And then I went home and wrote this letter to you, which I think you will probably read sometime when you are older. Now that I’m finishing writing it, I feel like maybe I am ready to put this whole sad day behind me and get back to being your happy father again.

But here’s the funny thing: I’m very pleased to know that I can feel this strongly still. When you’re three years old, your emotions are so strong it’s almost scary, and maybe sometimes you come to wish they would just calm down. But as you get older, it gets harder and harder to really feel strongly about anything, and you start to wish you could feel more. I feel so much love for you that it makes me feel very very sad sometimes, like when you are leaving, or when you’re sad. But most of the time, it just makes me feel very very happy to love you so much. So thank you for making me feel so much.

I can’t wait for Friday evening. I hope you are very happy in your new home.

Points of Order: Declarations of Love, Part One

2008-05-02T20:59:00.000-07:00

Before we delve into complaints and whining about our culture's failure to provide for its children, let's spend some time establishing why we care about the failure. Let's illustrate the intense love a parent has for a child, that I have for Sharky. Let's start doing this from the beginning...

Sharky was born by planned c-section for reasons pertaining to his mother's safety and health. This meant that she was in post-op during those moments when the baby is being cleaned, checked over, and then passed into the arms of the anxious parent.

So it was I alone who followed the nurses into a dimly lit room, where I was vaguely aware of the presence of other sleeping babies. I stood a few feet back as they placed him on a small table with a bright light shining down upon it. They poked him under arms, in various crevasses, prodded him here and there, as he yelped in protest, squinted, and squirmed.

After some time, they backed me into a rocking chair and placed the child into my arms. I think the nurses disappeared at that point, but perhaps they were standing there and it was just the entire earth that melted away.

He opened his eyes, looking across the room. His eyes darted from place to place, and he seemed somewhat alarmed to find himself here.

Then his eyes glanced up into mine and stayed there. He looked up at me, full of wisdom and a knowing I had never witnessed before and never imagined existed. His stare was not one of exuberance, or of comfort or pacification. It was one of solemn recognition, and it was shared by both of us. There was an overwhelming feeling of reunion, as if I was looking directly into a soul I had shared many travels with over countless millenniums, in unimaginable forms and worlds. My own existence has been, and will continue to be, joyfully intertwined with the one resting in my arms right now, and the care and love I take in nurturing it, I do the same for my own.

I, having been too long away from such ways of understanding, was stunned by this sensation. He, being so newly arrived to our world, was not phased in the least. He stared at me with tremendous care but without excitement, as if to say,”oh, hello...you're here too.” He then glanced back around the room for a moment with puzzlement, then back to me as if to say, “where do we find ourselves?”

I realized then that, having arrived shortly before him to this “dream of the red chamber,” as Cao Zhan calls it, it would be my duty to shepherd him through it.

Some might be inclined to say that these are all my interpretations of the events of July 1, 2002. But in actuality nothing could be less accurate. This was universal truth, the one moment of my adult life where I existed beyond interpretation, beyond words, beyond thought. There I was, face to face with my own reality and the reality of all...a sensation that many, upon experiencing it, have interpreted as god.

And it simply was.

Nearly six years later, I am still imbued with grace when I recall those precious moments. At any place, any time, I can reflect upon it and feel the strength swell inside me.

Nearly six years later, I still struggle to put what I saw that day into words, and still worry that the attempt to do so will somehow skew what really was.

And also nearly six years later, as I write this, Sharky sits a few feet away watching a Youtube video of the Incredible Hulk doing battle with a squadron of robots and helicopters, set to the soundtrack of some very bad Latino pop music. It is not all mysticism and epiphanies. The culture had a nasty habit of intruding through a process known as permeation.

But I feel confident the intrusions are just that: intrusions. And they will with time and consistent effort recede, and the fibers of what we know exists will remain unbroken.

The sage is shy and humble – to the world
he seems confusing.
Others look to him and listen.
He behaves like a little child.

- Lao Tzu

Ladies and Gentlemen...Sharky!

2008-05-02T07:21:00.000-07:00

Welcome to Still Life With Shark, a blog chronicling the ongoing joys, challenges, and Quixotic struggles with bureaucracy that are inherent in raising a child with Autism.

My son Sharky was born in July of 2002 in Olympia, WA. He and his mothers moved to Seattle in 2005, and I spent the next 10 months driving back and forth to Seattle to have him with me every weekend. Finally, in late spring of 2006 I'd had enough of that, and moved to Seattle as well.

Around that time our concerns over what seemed to be delays in his speech and other areas were peaking, and we decided to have him evaluated by the Seattle School district's special education department. We missed their cutoff time for that school year, and had to wait until summer was over to finally be seen.

In October of 2006 Sharky was evaluated by Seattle Public Schools (SPS) and was found to qualify for special education services due to significant delays in communication, social skills, social awareness, and motor skills. There was also suspected Autism due to stereotypical behaviors, such as hand flapping.

A few weeks later he was evaluated by a team of therapists and clinicians at Children's Hospital in Seattle, and was diagnosed with Autism.

And that's when the real fun begins! The ensuing 18 months have been a frenzy and commotion of struggles with government, insurance companies, and most of all the SPS. The good old SPS.

It's also been a time of meeting amazing advocates, teachers, therapists, and other children with disabilities and their families. It's included brushes with news media, professional photographers, and most of all, it's been a time to witness Sharky flourish into a person none of us would have imagined 18 months ago.

Over the next few weeks I will be posting summaries of our past adventures, letters to and from various bureaucrats, and pleasant recollections in order to bring us all up to date. From that point on, I will be using this blog as a blow by blow account of what is yet to come. Trust me, there will never be any shortage of material. Sharky will keep on producing the miraculous and the bureaucrats will keep on producing the horrific, and both will be here for the world to witness.