Pirouexiting IEPs

I want to tell ya'll about the day I had up on a bluff at Point Dume in Malibu, but first I want to tell you about the funniest question I was asked by one of Sophie's teachers yesterday. It was Monday morning, about 8:30, and I was doing the usual morning thing with Sophie at home which calls for a combination of the physical strength of an elephant, the body dexterity of a circus performer and the patience of a -- let's see -- praying mantis. I'm not going to give you anymore of a description than that, so let your imagination take flight, especially those of you who've been reading the exact same shit for the nearly nine years I've been writing the old blog.

Anyhoo.

The teacher* called me to ask why I wasn't at Sophie's "Exit IEP," and I said, What Exit IEP? and he said, Didn't you sign the paper letting you know the date of the Exit IEP was April the 3rd at 8:00 am? and I said, Um, no, I never received a notice about an Exit IEP and actually thought this would be the first year in two decades that I actually wouldn't have to perform my high-wire act at the IEP! (actually I didn't say that last part but I thought it with my tiny little mother mind™because you know -- really? an EXIT IEP?**) -- and he said, The form should have been in her backpack a couple of weeks ago, and I said, Well, I never received a form, and thought to myself with my tiny little mother mind™that it was weird they hadn't called me if they never received the signed form but remember I was busy with my own circus act at home which involved the elephants, the trapeze artist and the praying mantis, so I just said hmmm and nooo, and contemplated a pirouette (muscle memory every time I hear the acronym IEP), and then he said what is probably the greatest thing that I have ever heard uttered in the nineteen year history of the Sophie Girl IEP (and oh, lord, there have been some doozies), and perhaps the greatest thing ever uttered to my Caregiver Self and that was this:

Maybe one of your household staff removed it from her backpack?

Reader, need I say more?


I think not and will tell you about Point Dume and the whales and the flowers and the turquoise water and the television series being shot on the beach below which included airplane crash wreckage and actor/survivors and then later the Topanga Ranch Motel pictured above (which subs in for my "estate") at a later date.

*For the record, I love and admire Sophie's teacher, and he will be sorely missed when we are hurled off the cliff in May or shot out of the circus cannon and over the Pacific.

** For the record, I told him FOR THE FIRST TIME IN NINETEEN YEARS to just do what he had to do for the Exit IEP and send me the paper to sign. I have always wanted to check that box on the IEP notice that my household staff neglected to give me that says, "I am unable to be at the Individualized Education Meeting but hold the meeting without me anyway," because -- well -- really, what difference would it have made if I hadn't brought in those doughnuts every year, wore that pale rose-colored leotard and chalked my hands before doing the most perfect pirouettes on the wire above the earnest heads of the Powers That Be?

Berries in a Bowl and a Report From the Final IEP

I know I'm supposed to be grateful for drugs, but I'm not. Berries in a bowl are beautiful. When I open a new bottle of Onfi, the smell assails me. Milky. Sweet. Touch your finger to it and lick it. Acrid. Poison. When Sophie was a baby, I gave her the drugs and never felt grateful. I felt like I was giving her poison. I never could get out of my head giving drugs. Even today, when I pushed the syringe adaptor into the top of the new bottle, I wanted to gag at the smell. I didn't feel grateful.

Which has been said more?

1. Berries in a bowl are beautiful.

or

2. Drugs are poison.






Speaking of drugs, please visit and give some love to my article on Marijuana.com. I'm only going to be working there for another week or so (will explain when my contract is officially over) and would appreciate your enthusiastic response to it, if you're so inclined. It'd be like berries in my bowl.


Thank you to those asking how the Final IEP went. It went -- well -- finally. The "well" is an aside and not an adjective. An Assistive Technology person showed up for the first time ever and acted surprised that no one ever had before. When she said something about a box being checked off properly, I came down from the wire where I'd been doing my thing up in the air so high, ducked my head under the table and took a swig of my Bloody Mary. I leaped back up and did a little twirl. The OT said that Sophie didn't really need services but that she would continue to come in for a 30 minute consult once a month. I did a pirouette, a graceful dismount and took another swig of the Bloody Mary. I might have told her that The System had failed my daughter before jumping off the table into a handstand on the wire. The PT was a woman but spoke like a mansplainer. I learned about Sophie's need for weight-bearing and exercise. Despite a particularly excellent somersault off of the tightrope, I took two swigs of the Bloody Mary when she described a new bathroom contraption that she'd ordered only after I'd objected earlier in the year to the discovery that Sophie's aides were changing her diaper while Sophie stood up because there was no changing table in the bathroom. The P.E. teacher expressed satisfaction that The District had finally responded to her request to not give Sophie an F in P.E. because of scheduling difficulties. When I offered her a swig from the flask, she declined but said that when she's retired in two years, she'd meet me out for a drink. We all ate donuts, and when it was finished, I took a bow.

Unlace Yourself

to C

Who else out there lives in a house where just as the teakettle lets out its maniacal scream, the mistress is backing her car out of the driveway so one of the princes can depart for adventure, and the princess stirs in her sleep, perhaps seizing and prompting the other prince to wake and shout, "What is going on?"

What is going on?

Think renaissance. Think elegy. Think nineteen and ministers who write poetry.

Today is April 18, 2016 and I am off to my eighteenth and final annual Individualized Educational Plan meeting. I am contemplating a mimosa or Bloody Mary in a flask but will probably only bring donuts and a bit of extra resin so as to impress the crowd below with my dogged prowess. Teakettle, seizures, a drab table, a box of donuts, an array of pawns. Eighteen times.

Off with that girdle, like heaven's zone glistering,

But a far fairer world encompassing.

from John Donne's Elegy XIX: To His Mistress Going to Bed

Snappy Answers to Stupid Questions* and Some Observations**

Questions


1.
(The well-meaning stranger)

What's wrong with your daughter?

She has a rare form of epilepsy.

Can't they give her something for that?

What a great idea! I'm going to call the doctor first thing!




2.
(The man popping peanuts at a cocktail party)

Does your daughter feel love?

No, but she does feel hate, and you'd better move out of the way because she's a really good shot.



3.
(The social worker doing a conservator interview)

Does Mom let Sophie make her own decisions regarding her sexuality and marriage?

No!  I've already arranged for her to be married to my oldest gay friend so that she can get some decent health insurance benefits!



4.
(The Neurologist standing in hallway of hospital)

Have you thought about the drug choices I gave you as the next treatment for Sophie?

Yes, and I think I'm going for the one that can cause aplastic anemia instead of the one that causes blindness, and I'm not sure whether the other one is right for a six month old. Doesn't it have pretty bad long-term cognitive side effects?

Well, what's a few points drop in IQ really matter?

Probably not much in her case since she's already told me how to construct a bomb and blow up your office!


Observations

1.

We live in a country that likes to drop bombs, both literal and figurative, and then clean things up and rebuild afterward. This observation pertains to wars (Iraq), vaccination "science," cancer treatment, pharmaceutical companies, the medical-industrial complex, the tobacco industry, fast food companies, anti-obesity efforts, etc.

2.

When you engage with A Neurologist, you have to do a certain amount of suspending your belief that these are people with advanced degrees and therefore able to make intelligent inferences that don't involve their egos or ties with certain pharmaceutical companies.


3.
(in response to SB277 passing through committee)

I'm interested to know if the California government plans on chasing down those families who choose to delay or decline vaccinations for their children and themselves. Will they carry syringes as they run after us? Will all public places be verboten for those of us who refuse to get a mandatory flu shot? Will herd immunity be strengthened? I saw a pig fly the other day.

4.

Obduracy and control go hand in hand.


5.

On Friday I will be attending my 17th Individualized Education Plan for Sophie, and other than expressing my gratitude to her teacher and aide, I don't give a shit what happens in it. I plan on bringing donuts and, perhaps, a flask of bourbon. I will, as usual, wear a leotard and do my customary tightrope walk routine.***

















*All questions are factual. Answers were inside my tiny little mother mind.™

**All observations are from my tiny little mother mind™ and should only be construed as opinion, except for the first part of Number 5 about gratitude and not giving a shit. Those are facts.

*** More observations on what happens at this meeting are forthcoming.

Darkest Hour Before Dawn Thoughts

The g-d dog woke me up again this morning, her nails clicking on the floor back and forth up and down the hallway, needing to go out. She needed to go out to eat grass and retch which was after she had thrown up on the floor at the foot of my bed. I let her out into the honeymoon-lit back yard and then I let her in, closed the door of my bedroom and pushed the wicker hamper in front of it so that she couldn't push the door open and back in. Perhaps as a punishment for my lack of compassion, for my un-dog-loverness, I was unable to go back to sleep and lay on my back for what seemed like hours having the darkest hour before dawn thoughts of loneliness and despair, and then the mediocre thoughts of the awake too early in the morning women. I wonder if Henry will have sex too early? My god, they never gave me a copy of Sophie's IEP before school let out! Should I email that director of the SPED office right now to ask him what the hell? What the hell, anyway? I read a Lydia Davis short story. It was 4 am and then 5am. I served my time, fell back asleep.

Westward Ho

La Brea and Melrose, Los Angeles
May 2014

On the way to my 17th IEP this morning, my eyes leaked tears and I swore to myself as I wiped them away. I won't bore you with the litany of complaints that preceded the tears, many of which are valid and most of which are pathetic, but at La Brea and Melrose, I got into the left turn lane behind a long line of cars and asked for help -- not from God, per se, although I still have vestiges of duty toward that possibility, but rather from the air, the universe, the divine, the whatever. I turned my head to my left and saw what you see above, felt an enormous slap upside the head as they say in the south. Yes, I took that photo while sitting in my car, my head smarting from the force of the blow, waiting through a few red lights, inching along, stripped of impatience, anger, sorrow and panic. Even tears, or tears, even.

That's all I've got for today. The IEP went just fine. When I came home, I lay down on my bed, closed my eyes, thought of other things.

Wink

Sophie's IEP is done -- I set my tightrope up and added a couple of moves to my repertoire. The restraining vest that was ordered into the IEP last spring was ordered out. The Wicked Witch of the West has retired and was replaced today by a young, earnest and extremely efficient man who got it done and in whose mien I detected a kindred acrobatic soul. And Mr. Red Who is Purple?

Bless his heart.

Wink.

Oliver's IEP

Manhattan, straight up with Italian Maraschino Cherries

Easy peasy and really nice.

I brought doughnuts. The team was sensitive and efficient. Oliver was there for most of it, advocating for himself, somewhat shyly, but smiling his beautiful smile throughout.

I'm grateful for this school that he goes to -- it's not perfect, but it's pretty damn great, and I look forward to continued improvement for Oliver's experience with fingers crossed.

I'm feeling drained in general, though, for various reasons. If you'd like advice on IEPs or you're a reader that has a child with disabilities and new to it all, please feel free to email me. And don't read the sentence that follows this one.

Tomorrow is Sophie's IEP which is an entirely different ball game. For that, the drinking begins now. (See above photo).

Goddess

this post is dedicated to my friend S.S., another goddess of

non-verbal communication

That's a small lucite square that I found in a gift shop, years ago, on the marked-down table. What are the chances? It's kind of ugly, but it's also kind of perfect. I often compare my life to that of a tightrope walker, and this goddess appears to have stumbled but is catching herself just in time. This week I have that weirdly called IEP where I suppose I'll be going head to head with Mr. Red Who is Purple, the speech and language pathologist who mentioned that he wasn't going to recommend that Sophie continue to receive AAC (alternative and augmentative communication) services from a non-public provider. According to Mr. Red Who is Purple, Sophie doesn't respond to the iPad. That this is total bullshit doesn't need continued explication here. It's total bullshit. While her "response" is not always consistent, the iPad has become a fixture in her life, tying her to her classmates socially, allowing her to participate in her classroom activities, providing her with entertaining and accessible games and things to watch and interact, and allowing her some modicum of communication.

Mr. Red Who is Purple is a gentle and unassuming man, at best, a Luddite in the middle and an utter joke at worst. The other order of business will be to strike out the strait-jacket like device that was provided to us last spring for Sophie to wear on the bus home. The fact that it was entirely the wrong device and entirely inappropriate for Sophie as it's intended for children who pose a danger to themselves and others by disruptive behavior in the bus was enough to send the LAUSD bus division into a clusterf&*$k of hilarious proportions, and the only way they will now allow Sophie to ride the bus without it is to hold another IEP to strike it from the record.

Do you follow me or have you run screaming from the room?

Anywho.

In the early hours of the morning on Thursday, I will set up my tightrope in the dark and gloomy conference room at Sophie's high school. I'll strip off my jeans and tee-shirt to reveal my worn and slightly ragged leotard. I'll lace up my ballet slippers, adjust the top of my leotard to better showcase my cleavage, stick a chopstick in my hair to use, later, as sword, and powder my hands. I will set this small lucite square in the middle of the conference table over which I will walk and dance and twirl and tarry, my flags waving over the the red and purple and black and white and brown heads below.

Too bad the LAUSD doesn't know this

How We Do It: Part XXIV of a series

Last night I drove Henry to baseball practice, parked and turned off the engine. I pulled out an IEP that Sophie's teacher had sent home for me to approve -- there had been some small changes made in wording, decreed by the downtown beast that is LAUSD -- and my eye caught the box at the top that detailed the dates of Sophie's first and most current IEPs. Date of Initial IEP Team Meeting pulsated, and before I could even blink, the numbers coalesced into some kind of black arrow that pierced me right in the middle of my forehead so that tears gushed out and Sophie's three-year old self in 1998, her curly head and lopsided smile, her slanted walk and the hold your breath promise inherent in the unknown appeared in the car and I was fifteen years later undone. This is how we do it, the moment only mindful of the weight, not so much a black cloud but an arrow to the mind's eye, a rock that crushes the flesh, water and blood.

On the way home, Henry and I exclaimed over the moon in the eastern sky, a gigantic golden disc that retreated as we drove toward it, moonstruck.

Gertrude Stein, IEPs, Conservatorships and Books

I'm doing laundry and researching conservatorships. Sophie turns eighteen next March, and I have to divest her of her rights, basically, and become her guardian. Sigh. I'm also preparing for her IEP is this Friday morning, and her teacher asked whether I wanted her to be there. I told him that no, IEPs are always about what she can't do, and I don't want her to hear that. I also don't want to fill what peaceful, hard-working spaces are left in her brain with the educational jargon the IEP demands. Those of you in the know, know what I'm talking about: achieve 65% success with 92% accuracy and 50% prompting. When this involves using a spoon to feed yourself, you get my drift. I'm also listening to a cool recording of Gertrude Stein from 1934, where she chastises the interviewer on what it means to understand a text. I loved reading Gertrude Stein in college -- read nearly everything she wrote and relished the weird cadence of her language, the koan-like nonsense. Evidently, my enjoyment presupposes understanding, and in this one wonderful interview, Stein affirms what I've always believed and never articulated: either you like a book or not, and the liking is the understanding. I wish I'd known that when I labored for hours in an all-male book club in New York City, nodding my head in deferment to wiser minds that appeared to understand but not enjoy. In another life I was married to a PhD student in English literature, and I remember suffering through interminably boring get-togethers and parties where graduate students spoke of literature with verbal gymnastics that made my head spin (I was always a terrible athlete) but never of liking something or disliking something, of joy or its opposite. Do these people even like to read? I asked my husband at the time. Maybe I'm just slightly off -- I've written before of my envy for Gertrude Stein, for her massive head and unattractive hair, for her seeming comfort in her own bulk and obtuseness. After five straight days of exercise and yoga, I can feel every muscle and sinew in my body, and they ache. Would that I were Gertrude in a voluminous black dress, sitting in a salon with a mousy helpmate cooking something delicious in the kitchen, spinning words into stories that make no sense except to those who enjoy them.

Look here. Being intelligible is not what it seems. You mean by understanding that you can talk about it in the way that you have a habit of talking, putting it in other words. But I mean by understanding enjoyment. If you enjoy it, you understand it. And lots of people have enjoyed it so lots of people have understood it. . . . But after all you must enjoy my writing, and if you enjoy it you understand it. If you do not enjoy it, why do you make a fuss about it? There is the real answer.

(via brainpickings.org)

The dryer just binged, so it's back to folding clothes.

Reader, what are you doing today?

How to Prepare for Two IEPs in One Week

First, stop at a really bad fast food outlet and have enough restraint to only order a vanilla ice-cream cone and a small Diet Coke.

Oliver's IEP went very well -- he has moderate visual and auditory learning disabilities, and his school is extraordinary. I really didn't even need the ice-cream cone.

Sophie's IEP is next week, and I'll need to armor myself. This is how I'll feel, probably, when it begins:

photo via Matador Abroad

Or maybe like this:

Of course, if I have the right attitude, I should look like this:

photo by Alain Delorme

Stay tuned.

The Universe is abundant.
One and 1/2 hours -- all is well.
Individualized Easy Peasy

When you read this,

I might very well be in the second or even third hour of Sophie's IEP, or Individualized Education Plan. In lieu of feeling the usual butterflies and nausea (this seems to be a theme this week) because this is our 13th annual IEP, I have decided to rename the acronym to what it might better signify. That way, those of you who think of the IEP as one of the wonders of the education movement -- how do those kids get educated? you might think -- and those of you who, like me, have participated in this oft-hellish few hours of a day might be amused.

Because I'm telling you, the old sense of humor, bitter and dark, is what sustains me, at least, 90% of the time with 100% consistency. (That, too, is a joke that only the insiders will understand. Please let me know if you do.)

The IEP, or Individualized Ecmnesia Plan (the definition of ecmnesia is loss of memory of the events of a specific period)

Amnesia by Dominic Piperata

OR

The IEP, the Individualized Ecorche Plan (the definition of ecorche is a human figure portrayed stripped of the skin)

OR

The IEP, the Individualized Emberlucock Plan (the definition of emberlucock is to confuse, to bewilder)

is an ass-kicker in every way, no matter how many years I've been doing it.

We must remember this:

Monday Whatevers

I wrote a post last night that was supposed to go up this morning, but I woke up with a start and realized that it might be a teensy-tinesy bit offensive, so in a sleepy daze I opened my computer and cancelled it. Here's an excerpt of an article titled Why Evangelicals Hate Jesus by Phil Zuckerman, a professor of sociology at Pitzer College in Claremont, California.


The results from a recent poll published by the Pew Forum on Religion and Public Life (http://www.pewforum.org/Politics-and-Elections/Tea-Party-and-Religion.aspx) reveal what social scientists have known for a long time: White Evangelical Christians are the group least likely to support politicians or policies that reflect the actual teachings of Jesus. It is perhaps one of the strangest, most dumb-founding ironies in contemporary American culture. Evangelical Christians, who most fiercely proclaim to have a personal relationship with Christ, who most confidently declare their belief that the Bible is the inerrant word of God, who go to church on a regular basis, pray daily, listen to Christian music, and place God and His Only Begotten Son at the center of their lives, are simultaneously the very people most likely to reject his teachings and despise his radical message.

You can read this article and get an idea on what my post might have been about. Think family and differences in opinion. Think about discussing religion and politics to someone on the opposite side of the spectrum who is also your relative.

Ouch.


I did find this beautiful painting that I posted at the top, because Jacob wrestling with the angel is one of my favorite stories in the Bible. I've written about it here.

Vision After the Sermon: Jakob Wrestling with the Angel
Paul Gauguin 1888

In other news, I'm still collecting comments for a chance to win a $100 gift card to Dick's Sporting Goods. Don't you want to read or re-read about my efforts to be a good sports mom to my boys? Go HERE.

In yet more news, I have not ONE but TWO IEPs this week. My youngest son has some reading difficulties, and his IEP is actually a piece of cake, but I anticipate some fireworks at Sophie's. Not to mention the yearly bout of butterflies, depression and despair that the IEP generally brings, no matter how many times one has done it.

La Nausee. (that's French for nausea with an accent aigu). I read Sartre's book of the same title while studying French in college. I lay in a tire swing on the front porch of the house I lived in which we had christened The Shanty and parsed out the novel's spare French angst. Here's a picture of my copy which I still have:

Creepy, right? There appear to be dead trees and plants still growing out of the guy's head. I think that's symbolic, and perhaps I had a presentiment twenty-five years ago of my future with the Los Angeles Unified School District. I hated Sartre just about as much as I hate IEPs, even though I did love lying on that paint chippee porch with my best girl friends.

On the plus side, I'm grateful that the Individualized Education Plan actually exists and that my children's needs are accommodated, however haphazardly. When I dropped Sophie off at school this morning, I realized that I actually love her aide. I realized that I needed to write an entire post about Renita. I'm going to do that one of these days.

High School

So, I told you last week that I pulled Sophie from the school where she was enrolled for various reasons. I'm not going to write anything about the reasons until I have her new IEP (which is next week). And for those of you who know about these things, yes, I have to have ANOTHER IEP at the "old new school" to transfer Sophie into her "new new school" even though she attended the "old new school" for about eight total hours last week. I have to sit down at the table with her "old new teacher" who will rewrite the goals (the exact same goals, mind you) onto another IEP, authorizing the switch to the new new school, our home school. Then I have to take that new document over to the new new school, and go through enrollment there. Hopefully, Sophie  will enter the new new school next week.


That's the way the cookie crumbles, as we used to say.

In the meantime, I thought I'd better go over to the new new school and pick up the new enrollment packet because the forms are numerous and there's a lot of filling out.

Let's kill two birds with one stone, I thought.

So yesterday, I drove over to the new new school and went inside. I picked up my VISITOR badge, asked where the special education office was and then wandered the halls for about twenty minutes, looking for it.

It's a big school. That's just one of the many halls I wandered, halls that have so many classrooms, I lost count. I believe there are close to 3,000 kids in this high school. On the plus side, when I poked my head into doorways, everyone seemed like they were actually learning. Teachers were at white-boards, and kids were taking notes. It was quiet.

I kept wandering the halls.

Yes, that's the same picture. I just wanted you to feel, a bit, the aimlessness of my wandering.

I finally found the special education office, and the very nice man inside told me that I actually needed to go back to the main office where they processed enrollment forms.

Oh, I said.

When I got to the main office, the receptionist told me that I needed to go to Room 38 on the first floor, just around the corner, because all enrollment forms were dispensed there.

Oh, I said, Thank you.

I found Room 38:

Sigh.


Eventually, the Enrollment Package Lady returned to Room 38, and I left the school to go pick up my sons from their schools. (Yes, schools in the plural because we are now a family with three children in three different school locations).

While I was waiting in the carpool line, I started flipping through Sophie's enrollment package and began reading the new school's dress code. You must remember that the old new school was an all-special needs campus, and this new new school is a general education campus with a special day class that Sophie will be in.

Got that?


I almost broke out laughing when I read the dress code because it's certainly emblematic of what we're getting into. Here are a few examples:

Blankety-Blank High School

1. No hats on Blankety Blank High School campus unless part of a school activity.
2. No hair nets, bandannas, wave caps, shower caps or rollers.
3. No belt buckles with initials or extra long belts.
4. No handkerchiefs ("rags"). No red or blue shoe laces.
5. No baggy pants (if belts removed pants fall below hips), cut-off pants with high scoks, pants with spit seams, pants with staples, tacks or safety pins.
6. No see-through or mesh shirts or any clothing that becomes associated with an off campus group or gang.
7. No bathing suit tops, blouses or shirts, which expose the mid-riff or back, no tank tops.
8. No T-shirts or other items of clothing with profanity, with messages that may be inappropriate or offensive or which promote/advertise the use of controlled substances.
9. No white pressed T-shirts are to be worn as outer clothing.
10. No Walkman type radios/headphones/cassette players are allowed.
11. No beepers/cell phones are allowed on campus without the permission of the principal.
12. No unbuttoned shirts with expose the chest.
13. No sunglasses worn in any buildings, classrooms or offices.
14. No plaid or "Pendleton" type shirts buttoned to the neck.
15. No articles of clothing with "Kings" or "Raiders."

My boys and I are relieved that Sophie can't wear curlers to school, but we're wondering whether she can wear her bandannas.

It's a big city, folks, and an even bigger world.