Tuesday, November 28, 2006


Sweet M sorts the words she knows. (September 2006)

Over here at Autism's Edges we keep a lot of lists.

We have lists of Dolch words Sweet M has learned; lists of things that Sweet wants Santa to bring her for Christmas (she still believes); lists of schools we've looked at and found inappropriate and lists of schools we've applied to which have found her inappropriate. We have lists that constitute diagnostic criteria, and we have lists of educational attorneys.

Some days we try to keep lists of things we feel grateful for, as this is recommended as a way to boost one's sense of well being. And other days we have lists of situations that we feel are hopeless, as this seems to keep us firmly grounded in reality.

Apparently over at Sweet M's school they are also keeping lists. I am told by the psychologist who cannot make a diagnosis — the one who read us the list of diagnostic criteria from the DSM-IV-TR — that Sweet M's school is keeping a log of anything that suggests that she is not appropriate for their setting. So she doesn't really have to do anything spectacular to be booted out. She just has to pick her nose. Or not talk to another kid. Or only eat pasta for lunch. Or prefer to play alone at recess.

Earlier this year, in a meeting with the principal of the school, the principal explained to me that Sweet M has different teachers for reading, math, social studies, writing, and so on. (Sweet M is in third grade, but has six teachers, one for each subject — six different people she has to figure out.) She said we have her working with many different people because "we want to have a lot of eyes on her."

Not a lot of hands to support her, or hearts to embrace her, but a lot of eyes to assess her.

The social theorist Michel Foucault compared this sort of surveillance to the panopticon, a structure where those in power have a sightline on every subject. Think here of prison watchtowers, or professors at a podium who can view every student. The panopticon is a form — sometimes concrete and architectural, but most often social and bureaucratic — that focuses power in much the same way that the lens of magnifying glass can focus light.

There are times when one feels one is becoming paranoid. One is even tempted to check the DSM for the diagnostic criteria for various paranoid states. But then one remembers that joke turned adage: just because you think someone is out to get you — or, in this case, your child — doesn't mean you're paranoid.


Maddy said...

Don't concern yourself with DSM for the time being. It's due an overhaul and who knows what might happen after that.

As for lists. Don't get me started.


kristina said...

M is first on our list! (The Charlie's All-Stars one.)

KathyIggy said...

I'm sure you and M can make many positive lists--we have lists galore in our house. Lists of My Little Ponies, Lists of Laurie Berkner songs, Lists of chapters in the books Megan writes, Lists of Disney characters, etc. etc. etc.

Anonymous said...

i don't know, mothervox, but my gut says yuck, yuck, yuck. it's all wrong, what that school says. it's all from the wrong perspective. it's all tsk tssk and a grave shakes of the head like she is a submission with many typos and a weakly defined thesis rather than a beautiful jumble of grace and individuality to celebrate and embrace and then work with love and skill to shape and nourish. i make a lot of lists here too. sweet M is on my STAR list. that school is on my yuck list.

Anonymous said...

Longtime lurker, new poster. I come with a selfish, most likely totally inappropriate request: I am currently applying to Manhattan SN private schools for my own child, and what you write about Sweet M's school strikes an icicle of fear into my heart. I find myself wondering in something like horror whether I am applying to a place that is treating what sounds like such a great kid this way.

I am just one of your many readers, no one you owe a thing to, but I wondered whether there was some way to - I don't know, get a hint, or the initials, or the cross street the school is on. Because based on what you've written, I don't think I want my own sweet child anywhere near it!

Either way, you and your blog are very precious to me and the many people I've shared it with. You are a hero and a fighter and a beacon of advocacy for your child, and I really admire you.

MothersVox said...

And then there are the lists of my favorite blog comments and commenters! Thank you all for putting Sweet M on your stars lists.

And Anonymous, why don't you send me an email at mothersvox + [the "at" sign] + gmail [dot com], say a little bit more about your sweet little one, and leave some contact info. I'd be truly happy to talk with you, but can't post in much greater detail than I already am.

The school where Sweet M is right now can be fantastic for some kids, but it's not great if the child has any "social deficits."

Anonymous said...

This also does not sound like an appropriate school if your child is on the autism spectrum. Please try to get her into a placement with qualified BCBA's who will understand how to address her social deficits and other needs and will not be "making lists" to kick her out simply because she may be frustrated and anxious most likely due to the fact that the people who are educating her have no clue how to deal with a child on the spectrum. M sounds very mild, but being on the spectrum it is important that the right people are addressing her needs. She has so much potential. Don't waste it on these people who are simply looking to find an excuse to dismiss her rather than admitting they are not qualfied to educate her. Where is your SPED Director in all of this??

Mom to Mr. Handsome said...

Interesting choice of words they (the school)used..and SIX teachers? What's that about? In third grade? Are they including her "specials" too? (Art, PE and music teachers)Hopefully it was a poor choice of words and not a way of thinking.

I think that sometimes poeple automatically see our children as being incapable of acheiveing success, plans become different and mind sets change, when we see our children as individuals who undoubtly have the ability to attain the same amount of success as the next person. Therefore, our paths for them clearly look in a totally different direction.


MothersVox said...

It's so interesting for me to hear from each of you, because of your insights, and also because you refer to supports and persons who are simply not part of our picture here.

At one point, several months back, Kristina asked what our case manager was doing about all of this.

And I said, what case manager? How do I get a case manager?

And today Anonymous asks "Where is your SPED Director in all of this??

To which I can only reply, "What Special Ed Director?"

I don't know what sorts of supports and personnel are available to families in other places, or with other educational classifications, but we don't have any of those folks working with or for us.

That is what I mean about a paucity of resources. It's probably worse if you have diagnostic ambiguity, as we've had.