Monday, May 26, 2008

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

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

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

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

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

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

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

The next step involved the district.

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

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

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

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

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

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

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

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

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

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

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

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

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

First of all..."unfortunately"?

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

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

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

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


JC said...

Many school districts are now offering classes for "high functioning" kids with partial mainstreaming, with the goal of being fully mainstreamed by first or second grade. My son is currently in such a class. All the kids are verbal, though vary in their level. Each child is mainstreamed part of the day, depending on their "readiness" (sounds scary I know). As it was, my son ended up being mainstreamed about 50% of the time, and spending the other 50% in the SPED class with 8 other HFA/AS kids. They also did a motor group, friendship/social group with typical kids, Yoga!, etc. This is in Portland Public Schools, not some fancy district. My son will be fully mainstreamed next year in 1st and everyone agrees he's now ready. Many people criticize these classes and say that they should just be fully mainstreamed from the get go. However, some kids are still having enough issues that districts aren't able or ready (or willing!!) to mainstream (as you've discovered) so this is at LEAST a better alternative than you were offered. If Portland Public can do this (this is the second year of this program) then there's no reason Seattle can't as well. Ask them about that! There is NO reason a verbal child should be put with non verbal children--he needs peers!!!!

ted said...

Hi jc. Actually, Sharky in all likelihood will be in an Autism Inclusion program this year after having been in a blended K this sadly-soon-to-be-over year, so we have achieved the goal of getting him with typically developing peers (but shhh, don't spoil chapter 10 for the rest of the readers reading chapter 1!).

This post takes place about a year and a half ago, the beginning of our long battle to get him to the place he belongs. They just wanted to stick him where it's convenient, and I think most people just let them do it.

Are you in Portland OR or Portland ME? Of for that matter, Portland CT?

Sheri said...

You are right, most people do just let the schools do as they please. Most parents incorrectly assume that the schools have their child's best interest at heart.
Our cooperative's administrative leader even told us to imagine our child's education as a car--everyone wants a Cadillac, but we can only offer a Ford Escort. Nice eh??? We ended up signing our oldest up for 3 afternoons a week in a "regular" preschool so that he could mix with children without disabilities.
I'm happy to hear he is doing well and that you won your fight.

JC said...

I'm in Portland, OR. Our IEP for K was terrible. The coordinator was a monster and actually said things like my son "deliberately chose not to comply with directions." I fought and fought and eventually we did get a different coordinator and things improved, but it was still really awful and they acted like my child was some kind of nightmare.

This year our IEP is great. I just got a draft and they actually LIKE my child and have lots of great things to say about his abilities and how well he's doing. It's shocking how the right or wrong people can ruin your child's next year! They actually support him being in a typical 1st grade where as last year they acted like he belonged somewhere locked away.