Happy Father's Day

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

Happy Father's Day Dad!

I want to share a few things with you.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love

ted

Victory?

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

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

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

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

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

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

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

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

Colleen,

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

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

Sincerely,

Ted Munat


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

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

I look forward to seeing you,
Julie 

Three funny notes:

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

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

3) She misspelled Sharky.

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sound Bites From The Shark: Weekend Roundup

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

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

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

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

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

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

"You were a very good Santa Claus today."

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