Saturday, February 04, 2006


Reading Kristina Chew's post about the excrement that is dished out to us and our kids in a culture that thinks of cognitive and neurological dysfunction as "unclean," has helped me realize why I am so resolute—perhaps even obsessive—that M not be derailed from her spectacular progress this year.

Last year, in the midst of Sweet M's most egregious meltdowns, some folks at her school suggested that we look at another school which they thought might be more appropriate. I had looked at many, many schools when M was in the year between nursery school and kindergarten. Given the ambiguity of her diagnoses, I had focused my attention on the LD schools rather than the schools for kids in the spectrum. It was difficult to know what sort of setting would work best for her, with her basically average intelligence overall, and her "splinter skills" in visual perception, her significantly delayed language development, and her temperament (which, in the relative calm of her nursery school setting, had been alright).

M's SEIT (special education itinerant teacher) suggested that M could be okay in a general education New York City kindergarten.

M's speech language pathologist said that a general ed setting would be a disaster.

And the first psychiatrist with whom we met said that we ought to be looking at special ed schools, but she didn't specify exactly what sorts of special ed settings we should seek.

So off I went, focused on "the least restrictive settings." I looked at public schools in our neighborhood, one with a "collaborative team teaching" which is supposed to be the gem of the district. I looked at private, but state-approved (therefore funded), schools for kids with learning disabilities. And I looked at private but unfunded LD schools. It was a busy year. My search was exhaustive. I prepared more kindergarten applications for M than graduate school applications for myself in earlier years. Four times as many.

Some friends without kids, and friends with NT kids, intimated that I was being your typical New York City over-the-top mom. And maybe I was. But I know that in order for my day to go well—in order for me to be able to focus on my professional responsibilities—I have to know that M's day is going okay, too. This wasn't martyr-mom behavior: taking care of my child is a critical part of taking care of myself.

Eventually, through a long process of application and interviews, M was offered a seat at her current school, a state-funded school for kids with language-based learning disabilities and ADHD, but not specifically for kids in the spectrum. In fact, were M to be officially diagnosed in the spectrum, she'd be considered inappropriate for this particular school.

Although last year was a tough one for her, we still thought (and think) that her current school offers her the best possibilities for a rich education and the fullest life opportunities. The teachers are loving and well-trained. The curriculum is flexible. The afterschool programs mirror what is available at general education schools. And the school is picture perfect—the facilities are new and a visual delight, there is rooftop playground, a airy library and computer lab, an outdoor garden, a greenhouse for science projects.

But when the meltdowns were unremitting, M's principal and school psychologist were strategizing with us about other options and met us to look at another program for kids with more challenging issues. Rather than a freestanding school building, the "school" was housed in parts of two floors of a mixed use (office and manufacturing) building. The "library" was several plastic crates of books. The classrooms were dark, and crowded despite the 6:1:1 ratio. The furniture was old, worn, and mismatched–haphazard, disorienting, visually grating.

And as we walked through the hallways, we came across a little boy sitting on the floor unattended. He looked up—right into my husband's eyes—and said, "Help me, help me." I saw F shudder just before an aide came out to coax the little boy back into a class. I suspect that his own childhood experience of strict French military schooling might have been invoked.

We briefly observed a class where a girl around M's age was being congratulated for counting to 4—which is an incredible accomplishment for so many kids, especially for one's put in such unreinforcing settings, but which would not be challenging at all for Sweet M. Then we ran into an occupational therapist whom we knew from M's preschool services—an aggressive and incompetent person who had once tackled M and thrown her to the floor because she wasn't willing to immediately get off an office chair that swiveled. And when I say immediately, I mean immediately. M had been enjoying the chair for all of a minute when she was wrestled to the ground. This person was the head OT for the school.

Now I have to tell you the bad news.

When I'd been initially looking at schools, this one had gotten glowing reports from parents. It is considered a fantastic program . . . a groundbreaking program . . . a gem of a spot for a kid on the spectrum. I hadn't seen it then, because, as I said, I'd been looking primarily at LD schools.

We had a cordial meeting with the head of the school, a woman who was clearly a passionate advocate for autistic kids, and a wonderful and warm person—working 24/7 to try to make a good program for these kids—but offered the refuse of the city as her resources.

When F and I left the school we walked about two blocks in complete silence. I think it would be fair to say that we were speechless. "What do you think?" I eventually asked. He started to speak, to almost stammer a reply. The multilingual man was struggling to find words. So I interrupted him. I don't remember my exact words, but I suspect that they probably started with a stock phrase about stepping over my dead body, or "if-it-were-the-last-school-on-the-planet."

We sent notes to everyone thanking them for their time, concern, and commitment. And we meant it: these are all concerned and committed educators.

And we refused the placement. We have to refuse to accept the refuse, the leftovers, the hand-me-downs, and the outright excrement that's offered to us and our kids. But how do we do that, and still support the educators, like this devoted head of school, who find themselves struggling to create new settings for our kids? That's the really difficult work. How do we take the loads of manure that are thrown at us and use them to cultivate something lush and vibrant.



Estee Klar-Wolfond said...

Fabulous. You said it well...I wrote a lot about our school searches in some December and January entries in my blog.

I am also going through the same process. It is exhausting and I can barely catch my breath thinking of the struggles we will have year after year...

It goes without saying that from where we stand, this hurdle seems larger than Mt. Everest.

Let me know how everything goes with you...please.


kristina said...

We took off the gloves to handle our district last year for Charlie---maybe our reputation is a lot less pristine and shiney than it used to be (and we emit a strong scent of squeaky-wheel grease), but what joy do I feel to say, that Charlie loves his new school? Along the way to finding his school, we refused one cruddy, ******** placement after the next---why is it that "educators" think they can throw such at us and think that we'd be thankful?

I have learned for sure, we have to keep on refusing the refuse, for all of our kids' sakes!

Zilari said...

This is the sort of thing that needs to be written.

I am guessing that the phenomenon you (and other parents) have observed is largely an economic matter...though there are quite a lot of developmentally-different children in existence, there are fewer of them (us?) than typically-developing ones, making it more difficult to establish stable resources for this group. There is also the matter of heterogeneity in what is considered to be the "group" consisting of atypical children in need of special educational considerations. Not every child responds the same way to the same sort of environment, and as you noted, different diagnoses (whether they be technicalities or not) grant access to or restriction from resources in a manner that does not necessarily make sense for the child.

It really does seem to be up to parents these days to push and fight and research and expend huge amounts of energy making sure their child's needs are properly addressed, and that they are placed in an environment that helps rather than hinders them. I am thankful to read commentary from parents out there who simply won't stand for something that is unhealthy for their child.

I have often thought that perhaps my elementary school years would have been somewhat better with a greater degree of support -- considering that I spent inordinate amounts of time out in the hallway because teachers could not tell the difference between a child who took everything literally and one who was purely insolent. However, I do not think I would have done well in a facility that did not offer challenges, or that was unsafe, or that was unstable in terms of staffing and servive availability.

Reading this sort of thing makes me wonder what I can do...I am an adult on the spectrum and I do not have children (nor am I planning to have any), but I am horrified by the idea of kids that are a lot like how I was ending up in places that do not benefit them or that are outright harmful -- just because there isn't anywhere else for them to go. You've definitely gotten me thinking on this matter.

Mom to Mr. Handsome said...

Unfortunately, you need lots and lots of money to grow a garden that reaps a crop of wonderful opportunities for your child and their education. The public and sometimes private either do not have the resources, like you mentioned, or do not even know how to provide those opportunities. I wonder if Gabe will fall into a category where he is too academically on par, but his behavoir warrants a different setting. It sounds like you know what sweet M needs, I'm hoping you find it.


Jannalou said...

I don't know how you support the good parts of it without also exposing your son to the bad.

Perhaps by lobbying the administration to move the school to a proper location? Or by fundraising so that they can move themselves?

I don't know what makes people think that autistic kids don't belong in school - or, at least, "not in OUR school".

Someone once explained to me that people are afraid of things they don't know much about, and that a lot of what I see as reactionary discrimination against people who have cognitive/developmental disabilities/disorders/delays is actually just fear.

She also told me that these people are disabled - they lack knowledge and understanding, and this disables them. That understanding helps me deal with others a little better, because I have patience for people who are "just a little slow" and NONE WHATSOEVER for those who really ought to know better.

We need to educate those who do not know, and we need to do so in a way that acknowledges their disability and is sensitive to the limitations it places on them.