Tuesday, November 23, 2010

THE NON-COMPLIANCE MANUAL

I am not blogging as much as I like. I would like to blog about writing--or anything really--at least once a week, but alas, I can only blog about how I have no mental space to blog once a week.

You see, like so many people, I am busy fighting with the Chicago Public Schools [CPS] this past month.

Why can't we all get along?

Why, CPS, do you require me to be a 20-page-letter-writing lunatic so my daughters can learn things?

Why, CPS, must you make things harder than they already are?

Not like life is so hard for me, like, SO HARD.

Having a kid with disabilities is not all so hard. Don't get me wrong.

Don't get me wrong. It's not all so easy either.

You will never hear me say, "God gave me an impaired child to teach me a lesson about life, so praise be to Him."

Neither will you ever hear me say, "Everything, in the end, is a blessing."

He didn't. It's not.

Everything does not happen for a reason. I feel pretty sure that life is a collection of random--sometimes unfortunate, sometimes fortunate--events.

Still, despite even wanting to really, a person does learn things from less-than-ideal circumstances. And learning things, at least for me, makes me like my life and myself better. So having a disabled kid has taught me things and I will go out on a limb and say I suppose I'm better off for that. Here are some examples.

1. I used to be afraid having a disabled child and disabled people in general.

Now I'm not afraid because I have given birth to a disabled person and I live with her, and I realize nothing horrible is going to happen. She is not going to attack me with her faulty limbs and she is not going to rub her retarded germs on me and she is not going to make me feel full of despair and dread and pity every day of my life--at least not any more than I already did feel despair and dread and pity.

Everyone is supposed to say that diversity is cherished and wonderful and makes the world go round, and there is nothing to be afraid of, but of course everyone is afraid because there's absolutely something to be afraid of.

The person in front of you is talking like they have a mouthful of marbles and jelly. The person in front of you is walking like they're on the surface of the moon and drunk as a bastard. They look like . . . Something.

Something is scary. When you see Something of this type, you have to question, even when you don't want to:

1. What exactly is *this* that I am seeing?
2. What exactly caused *this* that I am seeing?

In other words, in essence, you must question:

1. Am I like *this*? [Answer: No, definitely not.]
2. Is it possible I could become *this*? [Answer: No, definitely not. It is not in my genes. It would have happened by now if it was going to happen, or if that's not true, it's impossible because it is not in my nature to do things that might make myself into *this.* I shop at Whole Foods and I have never had metal fillings.]
3. Is it possible that I could bear a child like *this*? Answer: No, impossible. See Answer 2 and replace "my" with "my child's."]

There are people who DO ask these questions outright and outloud:

What's wrong with her?
What's wrong with you?
What's wrong with him?
Why does she walk like that?
Why do you talk like that?
Why does he act like that?

And then they say this:

It is not normal in case you didn't know.

These people are generally clincially socially impaired or they are five years old or they are tremendous dicks. In any case, because this demographic tends not to spread the word, they are the only people who have the inside scoop.

It's too bad really. For this reason, everybody else just keeps not understanding, and because we don't understand, we keep being terrified that we may wake up one day--for reasons unknown to us--having a retarded baby or having turned retarded or having realized that we've always been retarded.

It's been known to happen. Or if it hasn't, it seems like it could have.

2. I am less afraid of the unspecified terrible thing that will befall me at some point in the future.

Raising a disabled kid is interesting. It can be fun, like unwrapping a present can be fun. Regular kids have progress charts. They progress according to expectation. They learn *this* by X time, and *that* by Y time. But kids with special needs--some of them at least--have no set trajectory for learning. So they can learn anything. They can learn nothing. They can learn a little--but not the thing that you thought they would. They can learn something, but in a different way than you thought humans were capable of.

I have always liked surprises. I don't care much about predicting the future. That is not my style. Neither is it my husband's, thankfully. Given our situation: Yay us.

But still, I have always had an unreasonable undercurrent of fear that one day the future would hold something terrible for me and that I would never get over whatever that terribleness might bring. To prepare for this thing, sometimes I wouldn't move my legs so I could practice being paralyzed. Sometimes I would blindfold myself and walk around the house and bump into things.

I don't do this sort of thing anymore. I don't have to. I have the experience to know that once I am paralyzed, I'll sit down, as I'll already be sitting down, and I'll figure out how to proceed. Once I go blind, I will pay someone to go online for me, and I will look up how blind people cook and walk across the street and then I'll do what those people have been doing.

3. One more thing. I pity myself less now.

I used to think my life was so sad. I was so sad for myself and my life. I didn't like my job because it was kind of boring, and also, I had to work 30 hours a week. Furthermore, sometimes I wasn't inspired to write poems. Sometimes I was really inspired and so I wrote poems but then I didn't like them and I felt embarrassed. It was so stressful, all of it.

It sounds like I'm being sarcastic, and I am, but it really was so stressful. It felt awful. Me and my life were too much.

Sometimes I feel jealous of myself back then because I had nothing real to worry about, but of course, there's nothing to be jealous of because I was completely unaware of the ease that was my life, and for this very reason, my life was not easy.

Now, because I spend a lot of time in hospitals and doctor's offices, I see people who have enormous challenges--bigger than I could ever imagine--and every day they show up. Hello. We are here for the life show.

I wish I had been able to watch more of these life show people at work in their lives 20 years ago, back when my life was so complex with nothing in it. But where would I have seen them? I was sitting on the floor of St. Mark's Bookstore reading Agni's Take 3 issue, asking, "Will this be me? Hmm. Hope so." And they were sitting in a hospital, saying, "Is this who we are now? Hmm. Guess so."

The biggest difficulty for us in our present lives is Compliance. My daughter is not a huge fan of the C word. "Adult-directed activities" and "non-preferred tasks" are not so much her thing.

I hear you saying, "This is the way for all kids, though."

And of course it is. But with (some) disabled kids, it is entirely another degree of non-compliance.

Non-compliance is their religion. Non-compliance is their God. They bow down and kiss the feet of the deity called No Way Am I Doing That, You'll Have To Kill Me First, and Where Will That Get You?

To give you some background, our daughter has cerebral palsy (CP). As far as we know, she is not straight-up autistic but her presentation is nearly identical to autism. She's nonverbal, she can't make eye contact, she does all kinds of "stimming" activities [spitting, rubbing, biting], she has a multitude of sensory issues, can't deal with transitions or new environments, is not interested in socially interacting with people she doesn't know, etc. etc. It's just that, unlike autism, the cause of these symptoms is primarily physical.

In other words, saying my daughter is not autistic is like someone who has a kid with cortical blindness saying, "My daughter isn't "technically" blind--she just can't see anything."

One way in which my daughter differs from typical autistic kids (we're told) is she's empathic.

She smiles when we smiles. She laughs when we laugh. She gets really sad when we're sad--so sad tears literally roll down and drip off her cheeks. She also gets really sad when we're mad at her too.

She tries to comfort us by sticking her hand under or down our shirts and patting our skin. If we scream NO!, she makes kissing sounds our way to tell us "Please be quiet. This kiss is to tell you I'm really sorry I've just upset you so."

(Now that I think about it, maybe this kiss is saying, "There there, don't be upset by my action because your crying is very upsetting to me and also, you see, I would like to continue on with what I was doing.")

The problem is--as I assume is the problem with most kids with autism--there is no way to overcome non-compliance when a child is not motivated by adult praise or adult punishment.

Self-help books are always like, "You have to do things for yourself! You can't do things to gain the love of others or because you're afraid they won't like you!" But of course that's stupid. Because only people with some critical social piece missing from their brain do things without any hope that they will be loved more and hated less.

Like I said, my daughter becomes happy as a result of us, but there is nothing inside her that wants to make us happy. She comforts us if we're sad or mad about her actions, but there's nothing inside her that WANTS to make us "not mad" or "not sad" proactively--by not doing those actions in the first place.

"All we need is love." That's what somebody said. "All we need is what I want. Love, shmove." That's what my daughter said. She's actually similar to a sociopath. An adorably cute sociopath.

Granted, she's doesn't want to rob us or kill us and eat us. But if you told her, "Please do not spit on the floor or I will come in and rob your parents and then kill them and eat them," she would look at you, and then she would think, "I would really like to spit on the floor" and then she would spit on the floor.

People throw all kinds of advice our way to help us inspire her to comply with our wishes:

"Tell her you'll give her candy!"
"Tell her you'll take away her toys!"
"Tell her you love her and show her how much!"

Or like my mom said this weekend:

"Slap her and put her in a closet."

To which I said:

"Uh, I'm sorry, grandma? What's that?"

To which my mom said:

"I didn't mean 'closet.' I would never want you to put her in a closet. I just meant 'slap her.'"

My mom is hilarious--in an autistic way. [As an aside, one time I emailed my mom a picture of one of my literary idols with the text: "She's my idol!" and my mom emailed back: "Your idol has a long face. What size underwear does Zazi wear, I am going to Meier now."]

Anyway, these hopeful people refuse to believe--as we once did--that begging or bribing or hitting or kissing or truckloads of candy are useless.

Sometimes I actually find myself admiring my daughter's absolute unwillingness to compromise and consider other points of view.

"Damn, I wish I could be like that," I think.

Hmm.

Everything to a point, I suppose. Is Everything to a Point a "saying"? If it is, does it make sense to you in this context? I'm terrible at sayings. Remembering them and using them right. Are all poets? Sometimes I say, "Throwing bad money after bad money." My friend says, "I don't think that's right--bad money after bad money." But it sure feels right. Because the money was bad the first time, even if you didn't know it. If you don't know that an apple is an apple until you eat it, was it not an apple before you ate it?

I'm not even sure what I'm saying with this entry.

I don't want this to be strictly a disability blog, I will say that. I hope it's not. I don't think it is. My poetry manuscript The Effect of Small Animals is about my daughter, though. ABOUT is not completely accurate. But the poems definitely come out of a collection of concerns" or "a collection of bewilderments" that relate to her.

That's how Marie Howe described where poems come from, a collection of bewilderments. Read this
interview.

I am obsessed with Marie Howe right now. I am obsessed with disability too, I suppose.

Oh, yes, CPS, where were we?

It is a machine.

It is an animal, a hungry one that doesn't run too well.

"Feed me so I can continue running!" the animal says. "You see those $5.238 billion dollar bills? If you stick those in my mouth, I will run like shit for another year. Just for you."

Annual Operating Budget: 5.238 BILLION.

BILLION.

BILLION.

For the past 30 years, about half of all CPS students have failed to graduate from high school.

I don't want to move to the suburbs but when I ask people, people who should know, people who have disabled kids, people who are disabled, people who are heads of organizations that advocate for disabled people, "What should I do?" they say

1. Move to Skokie.
2. Move to Hinsdale.
3. Move to Highland Park.

In other words, move to a school district with a lot of money.

5.238 billion dollars doesn't buy what it used to.

Here are my letters to CPS. They are boring and you should skip them BUT if you are fighting with the Chicago Public Schools, they may hold some interest for you.


THIS IS MY EMAIL TO THE IEP TEAM ABOUT MY DAUGHTER:

Dear MD, Ms. CK, and Dr. MK,

I wanted to thank you for meeting with me, David, and my friend JE yesterday about A. My husband and I appreciate all the time and effort put into the meeting by all the people who help my daughter at L2. We also appreciate that rather than rushing her placement, an additional meeting has been set in order to ensure that it receives the necessary time and due deliberation. As I'm sure you've gathered, the education and care of our daughter is of utmost importance to our family and we are truly grateful for the heartfelt efforts of the majority of those who work with A, as well as for the courteous and professional assistance you all provide.

However, I do want to say that I'm somewhat shaken by the IEP meeting on Tuesday and the input received from DC, in particular. To get right to the point, it's my feeling that DC, the speech therapist, was overly and inappropriately aggressive, combative, argumentative, and at points, insulting regarding our daughter, her abilities, and her educational plan. For the reasons discussed below, my husband and I would prefer that she does not attend our meeting on November 23rd and would like to formally request that another speech therapist be found for A for the remainder of her time at L2.

During the meeting yesterday, DC made many inappropriate comments that indicate an attitude towards our daughter that is not conducive towards a proper learning environment; i.e. one that will assist A to improve her functional performance to the maximum extent possible. For instance, when she said the equivalent of, "Well, you can teach a . . . you can teach anybody to press buttons." My husband later said, "She was going to say 'monkey.' She almost compared A to a monkey." Or when my friend asked for a clarification of how the educational classifications work. My friend J commented later to me, "I'm not sure I needed the speech therapist's piece of commentary about DD being 'just a dumping ground.' As in a place where you put trash.
Can we keep it professional? After all, this meeting is only two hours long." DC' comments lead me to conclude that she does not have the basic level of respect for our daughter to properly engage and help her speech to progress.

Additionally, I was concerned that the dialog regarding A's educational classification, to my mind, devolved into an overly academic debate--a show of content knowledge puffery--that sadly misdirected the conversation almost solely to DC's ideas and "expertise," and away from our collective purpose, i.e., to collaboratively brainstorm to find the best services for A so she can learn and develop.

Last year, two parents in Z's class (B's father and AG's mother) voiced complaints about Ms. C's comments about their children in their IEP meetings. Specifically, they were hurt by her unwillingness to consider other opinions/solutions/suggestions and they were disappointed by the way in which she minimized their children's progress and accomplishments. I understand it is natural, after many years of working in special ed, to become defensive when there are times you come into contact with parents who are in denial about the severity of their children's disabilities. But I don't think I delude myself about A's abilities--or her deficits. Or at least I try not to, for her sake.

Both David and I are well aware of A's many challenges both now and in the future--which is why we've sought out specialists in far places like Missouri and Alabama. It is also why we sat in the room with you for two hours yesterday. However, while it is completely appropriate for me to report what three different people have witnessed at home, or what I have heard from her regular speech therapist--who has worked with A since she's been born and has done quantitative testing--DC's reaction to this information was flippant at best, disdainful at worst, and further indicates a predisposition towards our daughter, which is not conducive to maximizing A's potential.

The fact is (which would comic if this wasn't such a serious matter) DC probably works with A less than most people in that room. KB works with A [DC just signs off on her speech therapy work and does the final assessments]. And despite requests for information and better communication, not once in four years have I ever received any piece of communication from KB or DC about what they are doing with A and why. DC almost out of hand dismissed Dr. K's assessment of A, although I've spent much more time discussing A with Dr. K for the assessment than I ever have with DC outside of an IEP meeting.

In any case, I felt strongly that DC came to the room with a pre-conceived agenda in mind for A (i.e., no diagnosis of autism, no diagnosis of Developmental Delay), despite the fact that she's never developed a close relationship with A and A has never responded well to her, which I believe compromises her ability to properly assess A.

DC's negative comments did not conclude when the meeting ended. I overheard her continuing to make negative remarks, as she didn't wait for me to even leave the room and only ceased when you, MD, gestured at me to show her I was still in the room, and thus, she should probably stop talking about us.

All of this in mind, as stated earlier, I would prefer if DC does not attend the meeting when we reconvene. I have heard enough of her thoughts. I feel like I get the gist of what she feels about A by now (see trash and monkey allusions earlier). Also, I would prefer her to have absolutely no contact with A in the future, and if I have to sign something that indicates that, I'm glad to.

As mentioned above, I would like to formally request that another speech therapist be found for A for the remainder of her time at L2. Please let me know if we need to do anything additional to ensure that alternative arrangements are created. I would have copied the principal directly on this email but her email address is not available on the L2 website. However, I will be sending a hardcopy of this email to her.

When we reconvene, I will bring A's outside speech therapist who has worked with her more extensively than DC, and can provide information on A's progress and potential and then, as a team, we can decide on the best placement for A. Thanks again for all of your time and your courteous assistance, we truly appreciate all the hard work everyone does to make sure A does the best she can to progress in her education.
Elizabeth Hildreth, mother of A Abed

THIS IS MY EMAIL FROM THE CASE MANAGER, RESPONDING TO ME:

To all concerned:

I am very sorry to get this letter and to hear about all of your concerns. I want to assure you that A is our first priority, and we will continue to do all that we can to provide for her needs while finishing her time with us this year. I want to apologize for anything that was said or miscommunicated at the meeting. I know we all strive to find the best possible fitting for A as she moves forward for next year and I thank you for being willing to reconvene on the 23rd. I will look into having another Speech Therapist join us for the meeting, and I believe that KB can continue to work with A for the remainder of the year (although Ms. DC may need to "sign off" on progress reports and such). I have also secured the attendance of our SSA (Specialized Services Administrator) for the meeting on the 23rd.

I appreciate you taking the time to put all of your thoughts and concerns and sending them to us. Feedback is important and this will not be overlooked. Please let me know if there is anything further that I can assist you with.

Sincerely,
MD, Case Manager of LS2


THIS IS THE EMAIL FROM THE PRINCIPAL RESPONDING TO ME:

Dear Ms. Hildreth,

I have read your letter and I want to thank you for sharing your concerns in regard A’s recent IEP meeting. I have spoken with M regarding your request and we are working on a solution that would be both beneficial for A and meets your needs as well. M will be in contact with you. Please contact me if you have any additional questions or concerns.

Sincerely,

Mrs. VS, Principal of LS2

THIS IS MY EMAIL TO MY MOM IN THE INTERIM:

DAMN STRAIGHT I SAID IT. THAT LADY PISSED ME OFF. I HOPE SHE GETS FIRED.

THIS IS MY EMAIL BACK TO THE IEP TEAM:

MD [CASE WORKER],

I appreciate your kind response and understanding. As a parent, IEP meetings are really difficult. Even when information is presented carefully and neutrally, it's still painful because there's so much detail. Even when you know everything already, to hear it aloud and see it on paper . . . it's not easy. But when it's presented in an aggressive, insensitive way, it's nearly unbearable.

I will call the speech lead today. Honestly, I have not had much contact with KB [A’s regular therapist; the therapist DC just signs off on her work], but, because this is all coming to surface, I will say this. The one day I was in A's class and observed her working in there, three things struck me.

1. A girl I comes up when KB is working with my daughter A and KB looks at her and sighs and says to I, "Jealous, jealous I." Then turns to me, and explains something like, "She's so jealous of A, she has be be right next to us when we're working." I was like, "it's fine. She can stand there, I don't care." I didn't. Why would I? Such a bizarre thing to say to a child.

2. She was working with a little girl D, maybe 3 with Down's, at the sandbox, and this girl was so sick with a cold, that her nose was literally running into her mouth, and finally I couldn't take it anymore, I got up and wiped the girl's nose. And she's says something to the equivalent of, "Wow, I can tell you are a mother, I could never wipe somebody else's nose...so gross..." or something like that. And I was thinking, 1) Even if you could technically argue that wiping noses not a part of a speech therapist's job, considering you teach kids with special needs who can't wipe their own noses, it actually IS part of your job. and

2) Is it less gross to watch snot run into this poor girl's mouth for 30 minutes? Who does that?

3. When she was working with the little girl D, she said, something like "You are so stubborn." She looked at me, and explained, "It's the Down's. I was taken aback. I asked, "Is it?" She said, "Well, I don't know." I was thinking, Aren't all kids stubborn, but especially those who have had tons of painful medical intervention? Just for their own survival, it probably pays to be "stubborn." It seemed like such a deeply ignorant thing to say, I almost laughed. Coincidentally, the week before I heard KB say this, I had gone to Starbucks with LG and during our conversation, she told me that DC [lead speech therapist] had called her son AG "stubborn" and had said the very same words, exact phrasing: "It's the Down's." Which is why my ears really perked up when I heard KB say that. LG was beside herself, like, "He doesn't even understand cause and effect, it is NOT the Down's."

So, there it is. I have never been confident in KB's dedication to her job and boundless love for children--based on the hour I was with her in class. Anybody can have an off day at work, I understand, so it may be unfair of me to judge, but that's my general feeling. She seems careless at best, neglectful at worse, and considering I've asked her to be in contact with me and I've never heard a word from her (especially after hearing Ms. DC claim that A in four years has made very little progress), I'm not thrilled with the speech team to say the least. I have no idea why I wouldn't have been contacted if they were continually seeing so little progress? But that's neither here nor there. Nothing to be done about it now. Also, based on KB repeating the "It's the Down's" comment, I don't consider her separate from Ms. DC--but more of a henchman. And I'm definitely not comfortable with Ms. DC signing off on A's reports--or anything where she has final approval of something as it relates to my daughter. David, especially, is not comfortable with this arrangement.

I feel the need to explain that I didn't complain about what I saw with KB in Ms. G's [A’s first year teacher] class because 1) It's not like her behavior was abusive, just sort of mean-spirited and inappropriate 2) It was A's first year and I'm sure some parents complain about every little thing, and I did not (still don't) want to be one of those parents. 3) Other than speech, I actually have been extremely pleased with the services A's received at L2 and A gets outside speech therapy anyway. Maybe I should have said something. I don't know. Anyway, in an extremely circuitous way, what I'm saying is: If I have a choice, KB wouldn't be it.

I thank you for putting me in touch with the speech lead. I'll be in touch. And I promise not to write any more 7-page emails. :) A has surgery today to remove an abscessed tooth, but if I can, I will try to call you sometime later today, M.

Elizabeth Hildreth, mother of A abed

THIS IS MY EMAIL TO MY OTHER DAUGHTER's CASE MANAGER:

Dear Ms. L,

I am asking that my child, Z Abed, be observed and tested to receive services for special education. This morning I asked MD, the case manager at Z’s former school L2, to send over Z's latest IEP and she says she has emailed you to get your permission. MD has also said she will give me a hard copy and I can share it with you.
To give you a little of Z's health and academic history, Z is a fraternal twin (her sister Amira goes to LaSalle II). She was born at 28 weeks, weighing 1 lb, 14 oz. She suffered a Grade 3 bilateral brain hemorrhage at birth, which eventually resolved. She was intubated and on a ventilator for the first couple of weeks after being born. She remained in the hospital from mid-October to mid-January. After she was dismissed from the hospital, she received speech therapy, occupational therapy, and physical therapy through state early intervention.

Z went straight into Pre-K at from early intervention and remained in Pre-K for 3 years. She attended AA, which is now called L2.

The first year in school, Z spoke only one word at a time, e.g., "daddy" or "home" and was extremely shy and attached to her teachers. Because of these language/social delays, she received speech services (as well as nursing services for a nut allergy). Her second year in Pre-K, she spoke in two- or three-word sentences or requests and showed some independence--progress from the year before. Her last year in Pre-K, she showed great gains in terms of her autonomy, social interactions, and language--at this point, she started speaking fluently in full sentences. Given her big strides in her last year at school, it was determined that she no longer needed services and would be seen only for speech consultation. At her final IEP review meeting, it was determined that she would not qualify for special education services, based on testing, observation, and reports from teachers and her speech therapist.

This year, however, with the increased academic demands being made on her, I am watching Z struggle with work at home. Although the issues are most transparent when she's doing her reading and writing work, the problems seem to be of a general cognitive nature involving 1) memory 2) sequence and 3) application.

1. For instance, in memory games, it's difficult for Z to remember placement of images on cards, even when cards are limited in number, as few as three cards.

2. In terms of sequence, if you ask Z to draw a picture illustrating the story of Snow White, she might draw a poison apple on the first card. I'm not sure if this is just placing the most "important" event first, but even when I ask her to tell me the story of Snow White over and over, it is always out of sequence, e.g., the prince kissed her, and then the witch got killed, etc.

3. Even though she knows her letters and knows all the sounds associated with those letters, she cannot figure out how to sound out words. She has trouble with words as small as "in." Also, given a list of 8 spelling words, if we go over that list ten times, she still can't remember the first word on the list, which seems (to me at least) to indicate some sort of memory problem.

Also, when we work with her on her school work, she doesn't seem to be learning and applying it. Each time she comes to a new page, it's like she's seeing it for the first time. And so, homework, for us, is just her father and I repeating the answers over and over to her. I should note that she does not seem to have this problem with addition. She seems to have mastered addition just fine. She also seems to have a great memory for visual objects that are placed in context (like the make of her aunt's car, for instance) and she seems to have a good spatial memory (e.g., explaining directions to a park or to the train station).

Given my observations of her struggling (and her teacher's observations), I would like to get her evaluated to see if she might qualify for services at school.

In the interim, I am more than happy to meet with school personnel to discuss options for helping her along with her work.

Thank you for your prompt attention to this matter. I look forward to hearing from you soon and to working together with school personnel to provide an optimum learning environment for Z.

Sincerely,

Elizabeth Hildreth


HERE IS THE SPEC ED CASE MANAGER'S RESPONSE TO ME

Hello Mrs. Hildreth,

Thank you for taking the time to update me with your concerns; i will take the steps needed to address your concerns. CPS requires that any student struggling at school should go through Response to Intervention first before we consider special education services. I will talk to the classroom teacher to see what interventions he is putting in place and what else can we do to help before we consider Special Education services.

Thank you, Mrs L

HERE IS MY RESPONSE TO HER

Ms. L,

A couple questions...

What does Response to Intervention mean specifically? What types of interventions are offered? How long does she need to have RTI before she can be formally evaluated to see if she qualifies for special services?

Liz

HERE IS HER RESPONSE TO ME

Response to Intervention are interventions that the classroom teacher put in place for an specific student to address academic, social, or behavior needs. It takes about 6 weeks, after that he has to meet with other teachers and get some more suggestions to interventions to put in place and then after another 6 weeks it nothing works then a referral is done to request an evaluation.

HERE IS MY RESPONSE TO HER

Ms. L,

I would prefer not to wait 12 weeks for an evaluation, given Z's extensive medical history and the fact that she has already had an IEP in place for 3 years. Please let me know what I can do to get things expedited. I have copied the following clauses directly from the Special Education Eligibility Considerations from the Illinois Board of Education:

Special Education Eligibility Considerations: Illinois State Board of Education

1. It is also important to note that a parent may request a special education evaluation at any point during the intervention process. The use of the RtI process cannot delay the evaluation, if needed. The district must fully consider the parents’ request and decide whether or not to conduct the evaluation. The district must then notify the parents in writing of its decision and the reasons for that decision.

2. If you believe that your child is in need of special education services, you have the legal right to ask that the school evaluate your child to determine whether he or she is eligible to receive special education services. You can ask the school to evaluate your child at any time, regardless of where your child is at in the RtI process.

3. The “date of referral” is the date of written parental consent for an evaluation. Screening procedures shall not be considered an evaluation.

4. Within 14 school days after receiving the written request, the district will decide whether to evaluate the child or not. If the district determines an evaluation is warranted, then the district must provide the parents with the paperwork to provide formal written consent. If the district determines that the evaluation is not necessary, it must notify the parent in writing of the decision not to evaluate and the reasons for the decision.

5. The district must advise the parents of their right to request a due process hearing to challenge its decision. Parents need to submit a request for evaluation to have their child considered to be eligible for special education services.

As referenced in this email thread, I placed a written request for evaluation on Nov. 9th. It is now the Nov. 23rd, and according to Illinois Board of Education materials and Illinois law, the district must decide whether or not to evaluate Z no later than the 29th--which will have been 14 school days since my written request. If I need to speak to someone at the Office of Specialized Services about this evaluation, please let me know. Thanks.

Elizabeth Hildreth, mother of Z Abed


Tuesday, November 16, 2010

THE OLDEST STORY ON EARTH

This essay "The Love of My Life" by Cheryl Strayed?

Read it. I read it the other day after my idol Roxane Gay posted it to html giant. I raced through it. My heart was pounding--cliche, however, in this case, completely true. Afterward, I sat there at my desk, dazed, mouth open, all blub blub crying at the end.

HOW DID SHE WRITE THIS? That is my thesis about "The Love of my Life" by Cheryl Strayed. That is my literary analysis of this essay in total.

If I wrote this essay, I could jump off a building afterward, screaming YAHOO!

How does a person know why they do what they do so well?

It's nearly impossible to look at yourself so unflinchingly. Have you ever tried? Somebody asks you why you did something, and you have no idea. Or you have an idea but it's surrounded in the protective padding of Lies and you know it. Or you have an idea but it's surrounded in the protective padding of Lies and you don't know it.

Everybody says Know Thyself, like I'm sure that's on a piece of paper hanging above people's desks all around the world. But nobody really does. Who would want to?

CS that's who. It's like Cheryl Strayer died and hovered above her body for twenty years, watching her heart like a doctor would, with objectivity and care--and then she came back to life and wrote this essay.

CS's psyche is like a barge being pushed by a barge. It is large and solid and in charge. It holds a lot of nasty stuff and transports all of it where it's supposed to go--in her case, to the page. CS's psyche is also like an open pleasure barge. You could totally hold a pageant or party on top of Cheryl Strayer's psyche. It is so strong and keeps everything in its place. Nobody would get drunk and fall over the railing into the water.

The Big Book from Alcoholics Anonymous--no, I'm not in AA--has this passage in it that basically says that there are some people who will never recover and goes on to explain "usually men and women who are constitutionally incapable of being honest with themselves. There are such unfortunates. They are not at fault. They seem to have been born that way. They are naturally incapable of grasping and developing a manner of living which demands rigorous honesty. Their chances are less than average. There are those, too, who suffer from grave emotional and mental disorders, but many of them do recover if they have the capacity to be honest."

Cheryl Strayed has this capacity. Most definitely. If this were a high school yearbook, Cheryl Strayed would be voted Most Likely to Kick Heroin and Then Write An Awesome Essay about It. In fact she did. It's called "Heroin/e">Heroin/e" and it's about being all wrecked and junked up in her early 20s.

Do you know there is such a thing as catastrophe theory? I do because I keep coming across it, looking it up, and then immediately forgetting what it is, and looking it up again.

"Catastrophe theory is a theory of mathematical structure in which smooth continuous inputs lead to discontinuous responses."

The guy who came up with the theory didn't really mean "catastrophe" as in "disaster" though. He just meant "smooth continuous inputs" cause abrupt changes.

As in:

Smooth continuous input = I keep putting a needle in my arm and shooting heroin in there and I feel great.

Discontinuous response 1 = I have abruptly stopped feeling great.

Discontinuous response 2 = I have abruptly died.

Am I applying the theory right? I'd like to think so.

When I think of catastrophe I always think of my friend Chris. He is gay and grew up in Speedway, Indiana in the 70s but it gets better. His family is Amish and thus, Chris hates anything faux old-timey/quaint, like one time he refused to go back to this restaurant where we ate because we had to drink water out of jelly jars.

Chris once told me this story about his step-mom who lived with his dad in a trailer. It's possible her name was Charlene though I'm not sure. In any case, she talked about herself in third-person consistently, with no irony, and called herself Char-Babe. As in "Char-Babe is going down to Hoosier Pete's to get a pack of Kools."

One day Chris and Char-Babe went to the grocery store and it seems Char-Babe was having quite a day and nothing was going right. It was just one of those days.

Well, wouldn't you know it, when Char-Babe and Chris got out to the car, there was a hole in one of the bags and it broke and everything was going everywhere like cans of Spaghettios rolling under the car. Char-Babe was beside herself. Holding the broken bag, she screamed:

WHAT A FIESTA!

That is my favorite catastrophe story to date and that says a lot considering it is ancient. An ancient story. Other than The Epic of Gilgamesh, it is, perhaps, the oldest story on Earth.

As you can imagine, when Chris and I lived together, we said this quite a lot, like if Burritoville forgot to put the tofu sour cream on our burritos or if we ran out of toilet paper.

To this day, when I am feeling especially tried or worn down, I return to What a fiesta. I recommend it. It's comforting. It's all-encompasing. It does and says it all.

Yes I am inciting ridicule, but I'm not judging Char-Babe as a whole. How could I? Our gas has been turned off for a week because we didn't pay our bill and we keep turning the knobs, checking to see if it's back on yet. What a fiesta.

This morning my daughter and I stood in front of the stove, expecting nothing, but when we saw a flame, we were so excited we jumped up and down and clapped.

"Yay! she said. "We can make this now!" [Holds up Pillsbury paper roll of dough in triumph]. "But we better make it fast before it's too late."

[As an aside, just checked again. Gas is not working. [WAF!] Zaz is crying behind me now. She really wanted those rolls.]

Could Char-Babe do better than that? Maybe.

Tuesday, November 2, 2010

PLOT-O-MATIC ROBOTS AND OTHER THINGS OF BEAUTY

BUSY, RG: Roxanne Gay writes about how we are all busy being busy at HTML Giant. I love her. Her non-fic writing embodies "good person," doesn't it? It does. That was rhetorical.

CHILD ABUSE AND DRUG USE, BOTH RIVETING OF LATE: I just read the Nancy Werlin's YA thriller
The Rules of Survival. Total page-turner. I love reading about child abuse and neglectful, crazy, drug-addled parents. I guess everybody does. That said . . . the book hasn't knocked around in my head since. It didn't get bigger with time. It didn't age well. Oh well. And I just read it two days ago.

Here's an
essay by Elizabeth Bachner at Bookslut about reading YA. Leave me alone, people. I'm in that same place right now. Aren't these five sentences beautiful?:

I can't ever change back the other way, unlive a day or a month or a decade, unmeet someone, unfall in love, unread a book. But I can dump a pile of shampoo on my hair, and go out into today's morning with cold, wet ears, and fly myself to Paris. I can order some crepes Suzette somewhere, or some other flaming dessert. I can crack open a new book and come out the other side. Everything will be as it should be.

THE BEST BOOK IN THE UNIVERSE--WHICH, LUCKY FOR ME, JUST SO HAPPENS TO HAVE CHILD ABUSE AND DRUG USE IN IT: Speaking of child abuse, has anyone read Heather O'Neill's
Lullabies for Little Criminals? I did. Last summer.

Speaking of aging? This book is like a 20-year old bottle of La Piana balsamic. The protag is a 12-year-old girl named Baby who is being raised by her father Jules in the red light district of Montreal. Jules has a minor heroin prob and Baby eventually falls into the hands of charming pimp named Alfonse. God. Damn. Such. A. Good. Book.

H.O'N. has stories at This American Life too. See
My So-Called Jesus. Description from TAL: Heather O'Neill reflects on what it would mean to be the savior of all mankind, but still in middle school.

Also, H.O'N. has a great reading voice and I saw her interviewed on YouTube for some Canadian literary event maybe? I don't know. But she smiled nonstop and seemed the nicest person on earth. I like nice people. I like writers who are nice.

THE PROOF CRUSHER: I'm back in touch with a friend who was like a sister to me in grad school and that makes me happy. We're sending each other poems. She found out yesterday her book is getting published. More happiness. She sent me some comments on a poem, describing a poem of mine as a knot--knot being a good thing. Then she said her issue with the poem was its title drains its juice and makes it a kind of proof. She suggested reversing lines (thinking of the title as a line), seeing what would happen if I played the poem backwards. So I did. I've never played a poem backwards. Great advice.

PUTTING YOUR WOLF ON BACKWARD: I
interviewed Matt Hart about his second collection of poems WOLF FACE. He said this, which was kind of incredible to me: "I ALWAYS revise as I'm reading. Things will pop into my head that I have to try right then and there. I've cut entire stanzas at readings. I've read poems backwards." Proof crusher!

PLOT-O-MATIC ROBOTS AND OTHER THINGS OF BEAUTY: Still obsessing over plot. I've been playing around with Dramatica Pro software, trial version. I actually read Dramatica's downloadable 400 page book on story theory. That was dumb to do. I'm sure I'm the only person who's ever read it.

So how the software works is it asks you all these questions and then it has this basic outline of scenes that is populated with notes based on the questions you've been asked to answer previously. Here's an example of the template:

Scene 1: Prologue The needs of a story determine the desirability of a prologue. The prologue can be used as a device to hook the audience's attention; establish a certain aura (romantic, violent); provide backstory; foreshadow certain events.

Scene 2: Chapter 1-Initial Situation --A novel usually begins with some sort of temporal and/or spatial initial situation. The initial situation gives a description of a particular, sometimes emphasized prosperity. This prosperity serves as a contrasting background for the misfortune to follow. From this situation stems the orders or advice to not interfere with this prosperity--to maintain the status quo.

Scene 3: Chapter 1Introduce Protagonist --Introduce and establish protagonist's point of view--the issues and concerns that shape the protagonist's outlook.

Scene 4: Chapter 1Absence --One of the characters may absent her/himself from "home." This may affect the initial situation, protagonist, or both. Examples: 1. Parents leave for work, vacation, war 2. Death 3. Younger member of generation leaves The leave-taking of a key character prepares for the misfortune, creating an opportune moment for it.

And so on and so on. Sixty scenes. It's like the 90-page design documents I fill out at workblueprints bigger than the thing I'm building.

I emailed my friend K some examples of Dramatica scenes and she wrote back, "Whoa. Cool. Though it makes me think one day, robots will rule the world."

My friend and I have an idea for a collab YA book. "We will be bots together," K noted. "Collabo-bots."

IEP MEETING, I.E., NINE EXPERTS SITTING IN A CIRCLE COMPLAINING ABOUT MY SPAWN: I have an
IEP meeting for my daughter in less than four hours and I want to shoot myself. Here are some things, among others, I am asking for:

Occupational therapy
Speech therapy
Physical therapy
Vision therapy
One-on-one aide
Touch screen computer

Actually my daughter already gets all those things--except for the touch screen--I'm just asking to continue services. I am bringing my friend J for moral support and intimidation. She was once a lawyer. Not some stanky janky one either. She went to The University of Chicago. That doesn't mean anything to me but J says to lawyers it's everything, like "Ooooh, hoooo hoooo, so and so went to Yale, Fancy, and so and so went to John Marshall, that poor retarded ruined thing."

J is representing me as Friend who just so happens to be a former attorney. She is my force of strength and support this morning even though she's never worked in education. But she has managed sales of really big buildings, so I think she will be able to help. I have a good feeling.

She has nerves of steel. When she was working, I used to ask her sometimes, "Don't you get super nervous at closings and start thinking, "OMG this building is worth 2.5 billion dollars. What if I mess something up and sell it for 25dollars?" I realize education is not property. The mind of a child is not a building. Not literally at least. Still, I have hope for J's utility. We will emerge triumphant.

As noted in subtitle above, IEP meetings feel like Nine Experts Sitting in a Circle Complaining About My Spawn. They're unbelievably painful. They're like doing taxes, like, black and white, there it stands: Annual income, five dollars.

Weeks before my daughters' IEPs, I start feeling depressed. I dread them. Last year, driving to ours, my husband and I threatened to divorce each other. Later, after it was over, we were like, "Ha ha. Sorry about that! IEPs are so stressful though, aren't they?"

THE IMPORTANCE OF BEING IN A DREAM ABOUT BEING IMPORTANT: The book LOVELY, EFFORTLESS, SAFE by Jenny Hollowell? Michael Schaub wrote a
review of it at NPR. I like him, he likes it, so would I like it? Would I like this book? I have to say, I'm intrigued. Even though I find actresses creepy and desperate, even Broadway ones, even book ones. Still. A 20-something protag is always appealing. They're messy and ridiculous, openly dreaming about embarrassing things like being important.