Friday, December 26, 2008
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."
Saturday, December 20, 2008
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.
Monday, October 20, 2008
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...
Thursday, October 16, 2008
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
Sunday, October 12, 2008
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?"
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.
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.
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...
Thursday, October 9, 2008
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.
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!
Sunday, June 15, 2008
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.
Thursday, June 12, 2008
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:
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.
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,
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.
Tuesday, June 3, 2008
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:
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.
Friday, May 30, 2008
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.
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.