Friday, May 30, 2008

Why Sports Promotions are Insulting

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:
  1. 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.
  2. Use your new free time to volunteer at a local school or non-profit organization servicing people with Autism.
  3. 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.
  4. 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.
  5. 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.
  6. 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.

Monday, May 26, 2008

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

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.

Sunday, May 25, 2008

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

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.

Tuesday, May 20, 2008

shark filled waters: let's cut to the chase

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 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.

Tuesday, May 13, 2008

Portraits of the Shark as a Young Man: Mary Poppins

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.


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.


Thursday, May 8, 2008

Little God Lead Poison and the blood tests

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
as protection

is for wonderful humanhood

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.

Tuesday, May 6, 2008

Sharky Hits the Big Time

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.

Sunday, May 4, 2008

Points of Order: Declarations of Love, Part Two

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.

Friday, May 2, 2008

Points of Order: Declarations of Love, Part One

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,'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!

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.