Spare the fetus, spurn the child

A round of the common cold left all of us cranky and couch bound this past week, and my daughter with Rett Syndrome in the hospital with dehydration and low blood sugar. From the same cold. A harsh reminder of her medically fragile position among us. Now she is better, and I am back to posting, reading, thinking and learning. Grateful to pull through another crisis and see her happily on her way to school this morning where she will be greeted by buddies and work on her most amazing computer. 

Of Arne Duncan in Ed Week this week: "He’s not been a great supporter of special ed. I don’t think he dislikes special-needs kids; it just wasn’t on his radar screen during the time he was here,” said Rodney D. Estvan, the education outreach coordinator for Access Living."

I read this Ed Week after spending another normal day at the hospital. I wondered, why is this not on the radar? No one would say don't treat her. No one would advocate I not spend the money on the ambulance, the emergency room visit, the IV fluid. Not many people would say, just let her die.

But no one wants to pay for school either. And I wondered, is it really just that special education is not on the radar? I am sure that if Arne Duncan or my local board members were there with me, they would have been compassionate. I am sure that seeing her wake up, and give that brilliant smile would have touched them as it did everyone else.

Why is the emergency so compelling, and the day to day is so boring? It is no less important to toilet train her (at six years old) and to teach her to use her PECS icons to ask for things rather than scream, and to assess her need for a computer than it is to give her IV fluids when she is sick.

And it made me wonder, this experience, juxtaposed with the Ed Week article, do education policy makers just not have enough contact with special needs kids? Is it really as simple as not getting it? I really prefer this theory over the malice and ill will scenario.

I would like Arne Duncan and every policy maker in the country to sit down and reconcile a double bind our politics has created.

On the one hand, we as a nation loathe abortion, so much so that a substantial group of people would like to see fetuses with identified genetic mutations legally a protected class of citizen. Spare the fetus.

On the other hand, many of the conservatives who hold this anti-abortion position are the same people who are crying out to remove IDEA funding from the stimulus package, and who strip Medicare for the disabled. Special education and children with disabilities are seen as an encroachment, an entitlement, a burden. If special education is seen at all, if it is on the radar, it is because "it" is too expensive. Policy makers seem to forget that "it" is made up of children. Choose life, but spurn the child.

These positions together? Spare the fetus, spurn the child.

It is time that our kids get on the radar, not just when they are at death's door, but on the normal days too. What we do in between emergency room visits matters too. And, surprisingly, it matters more. It makes a difference not just that they live, but how they live.

How about: Spare the fetus, support the child. I think that will be my new motto.

Look out Mister Duncan, we intend to enter your air space.

Upside Down

Education is currently upside down. The value of the goals we hold for students is less that the value of what they can learn, and no matter what we pay into the goals, we cannot get there from here.

Since the reductionist view of education took hold under No Child Left Behind, education has focused almost exclusively on deficits- on what students cannot prove they can do. This has led to a number of unintended consequences. These impact special education and other students who share the below and far below basic categories disproportionately but they impact all of schooling as teachers and administrators are encouraged and even bullied by policies and fiscal constraints that force them to keep their eyes on students' failings and ignore students' strengths.

For example, a student with autism has a curriculum that is focused primarily on language and social skills-- things we as non-autists, notice that they "cannot do."

For reasons we do not fully understand, people with autism develop expressive langauge, both verbal and non-verbal, very differently from those of us without autism. Thus, language and social skills are considered the "core deficits" of autism. It used to be thought, in the fifties through the seventies that this was a form of childhood schizophrenia, induced by the trauma of being rejected by the mother during pregnancy. This has long been abandoned as a theory but has been replaced by other behavioral theories focused on developing behaviors that will help the child pass as normal. More recent neurological studies have shown that the brain of autistic children is unique from ours and that their recognition and processing systems for non-verbal and verbal language may be just quite different. So getting them to pass as one of us helps? Well, it helps mostly us. It helps us feel more comfortable with them.

This is a radically unpopular point of view for a mother of an autistic child to take, I have learned in conversations with friends and professionals. But I have been reading many, many self-reports from autistic people, and hearing from my own daughter now that she is able to use her speech device. My own brother had a sensory integration disorder and his suicide confirmed what I am about to say: even when autists pass as normal, they are always painfully aware that they are different.

A friend of mine has a child with autism who is non-verbal. He is grinding his way through a very limited behavioral curriculum and almost grade level work in math. But, he is a genius with computers. When computers break in the classroom, they turn to this eight year old to reboot the system and get them working.

What if he stated working on computers and mechanical things along with his applied behavioral therapy? Sure, toilet skills are critical, who could argue with that. Especially if you have had the privilege of changing a diaper for a nine year old in a public restroom, you know that is an important skill. But isn't building confidence, joy, a sense of mastery over something, curiosity, interest, and potential future job skills as important?

I have another unpopular theory about this. His teachers don't know how to keep up with him. The system is so dysfunctional that it needs him to be disabled. Because if he were actually better at computers than his teachers, they would have to change the way they teach-- and learn more about computers. What if this funny, brilliant boy spent his day fixing computers, programming computers, doing research on the net? What else could he do? What would we discover about his self regulation, his ability to interact and his behavior if he were allowed to study things of interest, which he was good at instead of being shoehorned into a mold which he will never truly live comfortably in? Could we, for example, tolerate or even encourage stimming instead of trying to extinguish it? Stimming, the hand flapping and noise making which many autists report help them organize and calm themselves, may be essential to the autist feeling comfortable enough to work, think and interact.

Imagine a school-- a whole world-- in which a child with a disability could be more successful and masterful than his or her teacher in certain areas, and where ability, not the disability, were the area of focus. What would that look like for your child?

Could we ever let go of our own fears and prejudices enough to create a world in which these young people are allowed full membership and participation? Could we let them be truly differently abled?

Imagine an IEP goal that read: "The student will be able to use an appropriate stimming method (hand flapping, bouncing, rocking) of choice to focus and calm herself during work sessions."

Here is a template for writing in support of the IDEA funding in the stimulus packet, up for a vote this week in the senate. You can copy and paste this text, customize it and email it to your senator, the links are in the side bar on this page. Include personal stories, information about how special education supports your child and family, and PICTURES if you have them.

California and a few other states may attempt to reduce general fund allocations to special education in the amount it receives in new IDEA funding. I included language about this in paragraph two below.

Our California senators are both democrats, and expected to support the bill, but they can use your arguments, information and pictures as they discuss this with colleagues on the other side of the aisle and try to rally the needed votes. In my personal letter, I will include images of my child using her (very expensive) speech device and a list of people employed in her program as well as information about cuts under consideration in our district. Here is a generic template.

Please feel free to share your revisons in posted comments.
__________________________________________

Honorable Senators Feinstein and Boxer,

I am writing in support of the funding for IDEA in the stimulus packet. In spite of objections from the republican party that special education funding will not stimulate the economy, I know from personal experience that it will. Special Education provides jobs for teachers, classroom assistants, custodians, bus drivers, nurses, therapists and many others. In fact, if we are trying to create jobs, restoring funding here will provide more jobs here than in regular education because of the number of services and small classes needed by special education students. In addition, fully funding IDEA now, for the first time since the initial authorization, will allow states and local agencies to use unrestricted funds to rehire teachers and staff laid off in the current economic crises.

I encourage you to continue to support this bill and to extend my appeal, on behalf of my child, to your colleagues and friends in the republican party. Like the republican party members, I want to be sure that this package does have a stimulus effect. Please include language that prohibits states from reducing existing contributions to special education if they receive new IDEA funding.

Jobs are stimulus, and our communities are experiencing huge layoffs in education as school districts struggle to balance budgets slashed by mid-year budget cuts. Keeping teachers, classroom assistants, nurses, bus drivers and therapists employed will slow the foreclosures in our community and keep people out of the unemployment lines.

Please, for our community, for our country and for my child, implore the republicans to join you in funding IDEA now. It is not just right to finally keep this long unkept promise, it is the right time.

Thank you for your service to our country.

Apprenticeships, not electives

Recently posted on the blog operated by members of my local board of education was a comment about electives. Why Home Ec? It was a reasonable question and if we really took it up, we could have a positive impact on regular education, special education and the community.

An example of an elective that makes sense could be designed after a new program discussed in Solar Today: Training the green collar workforce. This program is being replicated in a few places around the country, included west Contra Costa County. We should jump on this wave now and paddle hard, or we will miss it.

Electives-- introductory courses that offer breadth and opportunities to explore a new field or discipline-- should be offered early in elementary and middle school. They should include REAL things like courses in electricity, plumbing, carpentry, child development, public health, water treatment and other non-traditional but essential topics that can lead to meaningful work with living wages.

By high school, "electives" should be phased out and replaced with courses of study. A student completing a course of study in electrical studies, for example, would have work experience and be ready to enter any number of union apprenticeships, which require passing grades in algebra and understanding of physics. A student completing a course of study in science would graduate with the experience and prerequisites needed to enter majors in pre-med or pre-engineering. Either way, students would have a solid foundation that prepared them both for meaningful work and a changing workforce.

We should have the courage to reinvent the remedial "work" mandated under the guise of NCLB-- math work that is in complete contradiction to every finding in the TIMMS study and reading work that contradicts research about adolescent literacy. Instead, math course work should be strongly linked to the science curriculum and math studied for what it is, a language that describes real world phenomenon. Reading should expand what readers know and want to learn about relevant and engaging topics.

This quality of education is currently denied to students who score in the "lower" half of the tested students. These students reasonably may decide they have better things to do than pretend to learn from this below basic education. Why would any student continue to manipulate numbers on a worksheet in order to prove their worth to a system that has written them off as "low performing"? Why do we pretend that they have to read things like "Doggie and Hoggie like Froggie" before they can move onto more complex things (like IPOD directions). Given the opportunity to see concepts brought to life while doing complex things like wiring solar systems on existing roofs can catapult these "slower" kids into income brackets that their teachers will envy and position them to do work they are worthy of.

It is time we cast off the classist and classical education of the 19th and 20th centuries and start treating all education as if it mattered. Maybe then all students will experience learning, and no one would leave school behind.

Creating High Risk Pregnancies

The New York Times opinion page ran an article about the octuplets born in California. Doctors weighed in on the consequences and advisability of these kinds of premeditated high risk pregnancies. Considering that one of the reasons congressmember Issa gave for the entire Republican party voting against the stimulus package is the funding for IDEA, I found this timely, and ironic.

Decisions like this one between this family and their physician team will lead to consequences for all of us as we struggle to balance our moral convictions, civic obligations to people with disabilities, and national ambivalence toward taxes and social spending.

Starvation Rations

In The Good German, Joseph Cannon describes how the Nazi's experimented with rations in the camps. Their goal was to spend the least amount of money on food rations as possible, providing just enough to keep the condemned prisoners alive and working. The questions they asked were things like: if we spend enough for a hundred more calories a day per person, is that more cost effective than increasing the rate of executions and arrests?

The current budget crisis is not the board's fault. The state of California, now in 47% place in terms of per pupil spending, bested by places like Arkansas, Tennessee, and Oaklahoma that have much lower costs of living, has placed its children on starvation rations. The question seems to be: What is the minimum amount we can spend and still keep most test scores high enough that people can still blame socio-economic status and parent's level of education and not the state for our crappy education system?

The problem we have in California is not a spending problem but a revenue problem. All the things that we know work-- qualified teachers, reasonable class sizes, preschool, engaging electives, art, music, sports-- all cost money. More money than we are spending. My yearly property taxes do not cover the per pupil allotment for my children, and as I have written before, this also covers many other vital services.

Here is what is needed: grownups. Responsible grownups who work hard and do their civic duty to pay taxes. Even maybe set aside the expense on the new Wii system or the leather interior on the new car so that we can fund our schools.

FIRST: the great state of California needs to triple it's per student allocation right away to bring our spending in line with New York-- a state with a high cost of living and a flagship educational system.

SECOND: The federal government needs to fully fund IDEA ongoing and increase block grants for states for educational expenses. ALL underperforming schools under NCLB need to be given more freedom to innovate and more funds to work with.

THIRD: Private fundraising by schools and districts (like foundations and PTAs) grossly contribute to the inequity between areas with high concentrations of poverty and ours, with relatively low concentrations of poverty. This is true within our own district, but more so across districts. Here again we need grownups, citizens of a proud democracy who believe that equitable schooling is the birth right of every child in America. Without this commitment from all parents and communities to every child in every community, the first two remedies will be what they have been historically: starvation rations that are supplemented by local communities that can purchase extra rations and starvation for those that can't.

And we blame the kids, the teachers and the schools for the unequal test scores.

FUND IDEA IN THE STIMULUS PACKAGE!

I received this from a friend via email and am posting as is. Get moving people! Go go go!

Call to Action—Support IDEA Special Education Funding in Federal Stimulus Package

Congress is currently considering legislation that would provide a massive influx of funding for special education programs. In addition to proposed increases to Title I, School Construction, Educational Technology, and other noneducation programs, the American Recovery and Reinvestment Act would provide an unprecedented $13.6 billion nationally for IDEA. Of that amount, California would receive more than 10%—or $1.36 billion!

Both the House and Senate are slated to vote on the proposal in the coming days. Your voice needs to be heard! In addition to alerting superintendents and board members in your SELPA, we urge you to do two things:

Call your local legislator and ask him/her to call his/her Congressional Representative and urge support for this funding.
Call and write your local Congressional member and ask him/her to vote for this funding.

This is a ROUGH estimates on what the school districts in your SELPA would receive if the funding is approved.

Share this information with parents in your community and coordinate telephone trees to contact members of Congress to urge support of increased funding for special education.