New Year, Old Grief

This will be more of a personal posting than most of the previous. I guess it is the new year that puts me in a reflective mood. 

One of the things about living with deep love for someone with a progressive illness is that the grief ebbs and flows-- like the tide.  This year for me grief was a spring tide at full moon. It breached my seawall and flooded my reserves. 

The low point was a trip to the emergency room by ambulance-- the 10 in a month-- for seizures that would not stop. I watched the nurse team thread the IV, and laid my head on her bed, holding her hand and singing to her. She stopped seizing and slipped into the deep sleep of her post-ictal state before they got her meds on board. When the doctor came in, she said, "I don't know why you keep bringing her in, there is nothing we can do. " That was the high water mark.

But the ebb always has followed. Four months later, she has been seizure free for three months. (There really are some things they can do for her.) But not well, yet. Maybe never. 

I recognize the state I have been in for six and a half of her eight years. It is the same state I was in for the two years my father was dying of cancer. The heightened alert state that comes with dealing with a health crisis. The almost crushing desire to make every moment count. Of knowing the last moment is near. Except that now I must learn to sustain this for a lifetime, twenty, thirty, forty more years. If I live that long. 

Sometimes, like now, the urgency ebbs. As she goes through a spell of being relatively well. Then I have time for other emotions. I want to run after the tide, chase it to the low tide mark and throw sticks at it, rage at it for ruining my sand castle dreams, the imagined life of parenthood. 

I took her two sisters to the mountains to play in the snow this weekend, and we had so much fun! We played until we were exhausted and cold, then drank hot chocolate from our thermos as it began to snow. It was a slice of heaven. And all day, I missed my other girl. All day I was racked with guilt. She was home with my partner, watching movies and hanging out... her favorite. We know she hates the snow. Her poor circulation puts her at risk of frost bite. Of course she cannot come. Of course she is happier at home with dad. Of course I am lucky to have a partner who will be that dad to her.  But I missed her. I missed what might have been. I missed seeing her joy in our shared experience. 

I want her to be well, to be whole. I want joy for her-- for her world to be bigger. She who has had so little, and deserves so much.  I long for a cure. I long for a cure. 

And in the meantime, I long for acceptance. And strength. And a better seawall. That aphorism that god only gives us what we can handle is a bunch of hooey. We handle what we are given if we can. I hope to handle what I am given with a bit of grace and a lot of love. The love is easy. The grace? Not so much. 

Total Quality Management in Special Education?

http://sweb.uky.edu/~jszabaO/QIAT.html

This is a link to the Quality Indicators for Assistive Technology home page. This consortium, out of the University of Kentucky, has created these indicators as a tool for evaluating program effectiveness. 

I am not a big fan of the movement to view education as a business (for many reasons not relevant to this post) but one area that I think education systems could learn from is Total Quality Managment.

After a three year saga with our district to get an Augmentative and Assisitive Communication assessment and speech generating device for my daughter, our district has agreed to complete a program quality review in this area. We are using the QIAT indicators. I am interested to see how the process goes, and eager to post some of the lessons learned along the way. 

My initial impression? This is a completely new process for the district. They really have very little, if any experience with collecting data about performance and using that information to improve their programs.

That might explain a few things. 

I am excited that they have embarked on this project and are including parents and many community stake holders. Quality management is a challenge for businesses with plenty of experience-- for the district to take it on voluntarily is remarkable.  I hope that this initial model becomes a process for improving quality that the district can use-- eventually-- in other program areas.  

California's Toxic Soup

http://www-bcf.usc.edu/idjlaw/PDF/14-2/14-2%20Daub.pdf

For those who like to read such things, this link is to a environmental law brief on California's attempt to regulate toxins. 

I have come to accept that my kids are swimming in toxic soup. I thought about moving to Alaska and living in a yurt, like some friends of mine, but I learned that among indigenous people there, the levels of some neuro-toxins in breast milk is almost as high as my own. There is no where to go. I will have to cast down my bucket right where I am. And hope the water is potable. 

After over two weeks at home with three kids under 10, the house was a mess this week. I woke up yesterday determined to tackle it. Seeing me mop the kids begged to be allowed to spray, wipe, wash and otherwise play in the water and suds. Being eager for any productive distraction, I took off my gloves and began sorting through our various cleaning products, looking for something mild and non-toxic. 

After sorting through every thing we had, I finally settled on dish soap-- without anti-bacterial agents. I'm not sure if it is safe, but it is probably safer than the GreenWorks  stuff I used myself. 

Even before my first daughter became symptomatic with a neuro-developmental disorder, I usually bought the greenest product I can find. But the recent discussion about chemical replacements in plastic toys has heightened my sense of alarm. Scientists don't know what is in stuff on the market. In fact, they cannot find out, because by law, manufacturers are allowed to keep this information as trade secrets. And no one has tested most of these things for health effects, and won't until after people begin to become ill or disabled. 

Last year, a researcher from the MIND institute at UC Davis was giving a lecture on the current research about the search for environmental causes of autism. He spoke of the complexity figuring out what is actually out there in the water, the air, our kid's pajamas, food, pillows, toys, soap... and then trying to figure out effects at different stages of development, and interactions between chemicals. Someone asked the inevitable questions about mercury. He said that he was actually more concerned about BFRs (flame retardents) in pajamas, clothing and furniture. 

Pajamas? What could be safer than the matching cuddly, soft, footie jamas I just got them  for Christmas???

California is attempting to regulate toxins in a new way, similar to the approach that the European Union has taken. In the absence of any reasonable effort by the federal EPA, this state is attempting legislation that would require manufacturers to prove their product is safe before it goes to market. Currently, manufacturers push chemicals to market with little or no testing, and if a chemical is proven to be dangerous (often through lengthy litigation) it is after somebody, or many bodies, have been harmed, some times irreparably.  The testing happens after products to to market, and we are the test subjects.  

This legislation might actually prevent the uninformed experimentation on human and animal subjects that is being pursued nationwide under the current policy.  How novel.

Maybe someday I will know whether I can drink the water in my bucket, or give it to my children. 

Family seeks a great nation

http://specialneeds08.blogspot.com/

I wanted to encourage folks to check out Mark's blog. It is really cool. He has spent some time working on policy issues (check out his profile and myspace page!) I read his article about military families having difficulty getting health care for children with autism and felt connected to military families in a new way-- we have a shared struggle when it comes to our kids. 

A few things are clear to me as I struggle to find resources and services for my daughter. We are all in this together, in a terribly isolated way. We have a shared struggle but not yet enough organization. 

First, every agency and health corporation has a stake in denying services to her. They know if they deny, they protect their budget, and "someone" will cover her needs-- or more likely the family will give up. For example, in trying to get a speech generating device for our daughter, we orginally went to the school. They denied, so we went to Regional Center (in our state, they are funder of "last resort".) Regional Center told us to appeal the the school, school tells us to appeal to Regional Center. For three years we got stuck in this loop. 

Second, for profit health insurance companies make money by denying services. A percentage of our premiums go to shareholder payouts-- money that could be spent on health care in a non-profit or single payer system. It is wasteful and inefficient if the purpose of health care is actually to provide care. A single payer system may not be perfect, but at least we would not have the conscience crisis of knowing that kids were denied health care so that share holders could get their cut. 

I know I am stumbling into a partisan issue here. But I want to raise this issue. Strict constitutionalists are against interpreting the general welfare clause to mean, well, welfare. Consider this though. The maternal mortality rate in the 18th century was about 25% -- read that as one in four women died giving birth. And the infant morality rate was even higher. My grandmother a century later had thirteen babies. Eight survived to adulthood and of those, six died of influenza during the Spanish American War.  Adults typically died in their forties, often with "their boots on" from illness, accident, warfare and, yes, age. Senility was rare. Most of the diseases we think of as age related (Alzheimer's, Parkinson's, cancer) were unknown. Who lived long enough?

We are so far removed from the experience that we simply cannot imagine it. 

We today are heartbroken (understandably) if one of our children dies. Parents sue obstetricians frequently if a child is born with CP or another disability that might be attributed to a birth injury. My father died at 60-- before he retired-- and we were shocked. He was so young. He should have had many good years left...

And it is hard to imagine that Jefferson, who lost his wife to childbirth, could imagine our world, where perinatology and neonatology have advanced to the point that premature babies of 28, 27 even 26 weeks sometimes survive. That they survive at all, and thrive, even with complications and disabilities like visual and hearing impairments, respiratory ailments, intellectual disabilities, is an artifact of medical science and social change. Or that someone with a spinal cord injury could live... for twenty, thirty or even forty years. 

The founders could not imagine this. And it is hard to know how they would have approached the social issues that these advance raise. At a time when the solution to an economic downturn was to follow the calvary west and claim newly depopulated lands, shoot a quadriped and put up the meat and wild vegetables for winter, when people like my daughter would have died young due to bedsores, seizures, starvation... it is hard to know what they would have seen as solutions to our current dilemmas. 

How would they have resolved the sanctity of life versus the spirit of independence and individualism that we attribute to them? We have a few clues. One clue is that when social issues were too hard to resolve, they left them to the states and future generations to solve. Like slavery. And women's voting rights. And the states and private charities took some of these issues on. And created great institutions like orphanages and insane "assylums." I guess they really did not want to deal with it either. 

I think we will have to think for ourselves. Be the grown ups in our own time. I am fully in favor of drawing on the wisdom of our ancestors-- but also recognize their short comings. How can we use the checks and balances, the evolved powers of the administrative and legislative branches of government to solve the deeply challenging problem of caring for the vast numbers of children and adults with disabilities? How can we do better than they did?

One thing I am sure of-- one of our great adaptations as a species is our ability to cooperate, form social networks, divide labor and work together to build societies. Animals solve some of these problems by eating their young and banishing adults. Humans build hospitals and fund Medicare.

Now we need to think carefully and talk together-- as if we really wanted to hear each other-- about what kind of society we can make. 

Because my family can't move any further west in search of game and a place to live. We are already in rough seas, nearly over our heads. And we need a social network worthy of our daughter.

Free books online

Fantastic resource with books published and downloadable online. Books on mental retardation, autism, educational policy, accessing SSI. Many new or current resources. Check it out. 

http://www.disabilitybooksonline.com/

I've been looking for resources for students in secondary educaiton, in transition, on their way to college and in college. I found this resource this morning and the database of free accessible technology is a real resource. Definitely worth checking out. 

http://adaptech.dawsoncollege.qc.ca/index.php

I found this site this morning as I was trolling the net. I highly recommend it. Great resources and a wide perspective of news and events related to special education. Resources as well, and even the ads are relevant. 

http://www.specialednews.com/

Pre-Natal Testing

I just finished reading "New Era, New Worry" (Carmichael, Mary. Newsweek, December 15, 2008). The article explains the positions of the Allards, who have a son with Down's syndrome. They support more Down's Syndrome babies being born. 

Prenatal testing has become a disability rights issue, because as Newsweek put it, non-invasive genetic testing could "result in more diagnoses, more abortions, a dwindling Down population and a drop in support for families who carry to term. 

The Allards have had a good experience raising a child with a disability, and they want more people to know that it is possible to raise a happy, healthy child with a disability and maintain a strong marriage and family. The concern is that people with Down's syndrome will have a shrinking community and less support. 

That would be like having a child with a rare disability. 

Our daughter has a rare genetic mutation that affects about one in 10,000 live female births. It is nearly universally fatal in males. Still, we do enjoy a wider community and network than friends of ours who know of exactly 17 children in the world with their son's disability. 

When we learned that our daughter had a disability, after watching her develop normally for 18 months, her baby sister was three months old, not yet weaned, and I was just allowed off bed rest after complications from a C-Section. 

All hell (no, really not heck, it was living through Hell) broke loose. Our first child went from a happy contented baby to a screaming, sickly child with degestive problems, self-abusive  behaviors, and screaming, screaming, screaming, sometimes 10 hours a day. 

"Babies just don't cry ten hours a day, I know it must feel like it sometimes, but that just is not possible," said my family doctor, whom I still love to this day. She simply could not conceive of what we were living through. No one did for two years, until I found out about her syndrome online. 

Ten hours not possible? I was the one who walked her around the block from mid-night to 5:34 AM (sunrise) in the sling so that my partner and our newborn could get some rest. He took a sick day and did the same thing, pacing the living room floor with her in the colic hold, putting her down to scream while he fed the baby, pacing pacing pacing so I could sleep. 

We decided not to have any more children. 

Then we learned that she had a genetic mutation that can be screened prenatally. After long midnight talks and much soul searching, we decided to try again, with the understanding that we would terminate a pregnancy if the developing fetus had any genetic diseases that we could screen for. 

We are pretty lucky, we have a strong family, we still love each other, we both have good jobs and health insurance, three great kids, and a wide community of friends that we have made as parents of a special needs child. But it is not the life I choose. We make it work, and we embrace our child, and we fight for her. But I would never wish this life on anyone, least of all another child like her. 

Every family, every mother, every child, every disability, is different. Even disabilities that are the same are different individually. I know a child with Down's with a (rare) complication-- a spinal malformation that left him a quadrapalegic on a ventilator. And I know children with my child's disability who, unlike her, never walked, never ate, have feeding tubes and intractable seizures. 

We have been relatively lucky, at least as far as bad luck goes. But that is the thing about genetics. You NEVER know. It might be the good kind of down's syndrome, or it might be pretty severe. Yes, we still know a lot about supporting people with Down's and by and large have changed the natural history of the syndrome dramatically for the better. 

But being a parent of a special needs child is no picnic. In fact there are fewer picnics, merry-go-rounds, and play dates for many of us. And a lot more medical appointments. 

This has to be an individual decision. I support everyone who has a child with a disability, whether they chose that or not. I know how hard it is. 

And I support women who choose to terminate a pregnancy when they learn of a genetic mutation that is disabling. Only they can know they factors that impact their decision. And they can only make the decision with complete information-- unbiased, complete information. That includes the full prognosis for better and worse.

For me it was painful, but simple. I would not subject another child to this, not even to create a community of support for mine. 

But Down's is not like her syndrome. And I hope that the Sarah Palin's of the world will rise up and join the rest of us who have been struggling to fund and expand IDEA for years. For her son, and for my daughter, and the rest of the huge community of families that love a child with a disability. 

IEP Goals. Audience, purposes and form

Much of what I have learned about writing IEPs is in response to problems created by not know how to go about this task. Writing IEP goals is a writing task, and it can be guided by the same kinds of questions writers ask: 

• who is the audience?
• what is the purpose?
• what is the best form?
  

Who is the audience? That question seemed so obvious to me before we had to get ready to go to hearing. The IEP document, obviously, is written for the current IEP team, people who know your child. But it is also written for future IEP teams, who have not met your child yet. Potentially, it is also written for administrators who step in to help if problems arise, state monitors, courts, advocates, doctors and therapists. I used to accept goals that were written just for our team, assuming that everyone shared the knowledge of my child that would make the goals clear. Now I know that they need to be written for people who will never meet my child. That means they need to be clear and complete in a way that someone who has never met your child or understands her diagnosis can understand. 

What is the purpose? The IEP is first and foremost a legal contract between the school and your child. It is binding, and it protects your child's rights to all the services, including the duration and manner delivered, in the IEP. The district is only required to implement services that are documented in the IEP. This means that it needs to be very thorough and error free. Small errors in the duration, frequency or types of services can lead to big problems. 

In addition to serving as a legal contract, the IEP serves as an historical record for new teams. It should ideally give a picture of the child's educational history and progress and give the team useful information about next steps to take with the child. 

What form should the IEP take? Typically districts will have their own forms for IEPs so this is taken care of for you. However, often the forms do not allow enough room for the purpose. We often attach additional pages for different sections. IEPs often have different organizations from district to district. All IEPs should contain current levels of functioning and goals. The current  level of functioning and goals should drive the entire IEP. They should describe not only what the child can do now, but also what issues there are to address in the current IEP and beyond-- and why the team is working on the goals in the IEP. 

A sample of our most current communication goals-- the best ones we have to date-- is below. Notice that the goal includes the assistive technology, provides a rationale for the equipment used, includes not just who (teacher, aide etc) but refers to the skill needed, and gives measurable outcomes (how many words, how many turns, and in what context). 

_________

Augmentative and Assistive Communication Goals 2008

Overview: Due to severe apraxia associated with her diagnosis, ___ is non-verbal and not expected to regain speech functions. She has limited use of her hands and cannot use sign language, complete picture exchanges or reliably direct select with hand operated switches. ___ uses eye gaze to select icons. According to her most recent AAC report, ___ understands conversational speech according to her age. ____ is a multi-modal communicator, using proxemics, utterances, gestures and aided communication with no and low tech devices and will begin using an eye-gaze supported high tech device 9/08. (See IEP face sheet for equipment list). Her receptive langauge is much higher than her expressive language. She is able to participate in up to six turns of conversation with skilled partners about familiar topics. She has few aided communication opportunities particularly outside of school.

Academic language

Current level of functioning

___ academic vocabulary is limited compared to her conversational vocabulary and her receptive language. ___ needs exposure to rich and engaging academic academic content appropriate to her age and an eye gaze accessible speech generating device will allow her to access all of her vocabulary independently. 

Long term goal:

To further develop academic linguistic competence, ___ will develop a core of 100 words using eye gaze accessible aided communication systems, including her high tech device, to express her understanding of core math, science, art and language arts concepts with skilled communication partners. 

benchmarks: 

___ will use a core vocabulary of 50 words with a skilled communication partner to generate one word responses to prompts about grade level academic concepts, closing at least one circle of communication. 

 

___ will use a core vocabulary of 75 words with a skilled communication partner to generate one to three word responses to prompts about grade level academic concepts closing one to three circles of communication. 

Conversational lanaguage.

Assistive Technology- fight for promise

I thought it might be useful for folks to post the story of our fight for our child's right to speak. A three year legal battle with our school district that almost cost us our home, but finally resolved with her having a device, a qualified support provider and an appropriate placement. 

First a little history and some definitions.

Assistive Technology is any tool or device that will help a person with a disability perform a task that is impacted by the disability. Assistive Technology (AT) can be very simple (braille, pencil grips, slant boards) to very complex (standers, motorized wheel chairs, voice activated computers or switches). A sub-specialty in AT is Augmentative and Assistive Communication (AAC). This branch of AT can include:

•  "no tech" supports (like sign language, visual schedules and cards with Icons and words, some times called PECS- Picture Exchange Communication Systems) 
  
•  "mid-tech" or "light tech" (single switch battery operated switches that can operate simple machines or communicate with pre-recorded messages) and
  
•  "high tech" (dynamic speech generating devices that allow the user to select a wide range of vocabulary and create their own messages).
  

Since our daughter is aphasiac, we thought AAC was a natural option to explore. Would she be able to communicate with a device? She used everything else we gave her-- sign langauge, PECS, yes and no cards. It was clear she wanted to communicate. 

Unfortunately our school district fought us every step of the way. It is helpful to know what arguments do not work, legally. First they claimed she was too cognitively impaired to use AAC. 

AAC is appropriate for people with mental retardation (the legal term, not mine) including those with Down's Syndrome, Fragile X and other diagnoses. 

Then they claimed that she was not able to use a device because she was unable to access the switches with her hands. In trials, she was not able to demonstrate accuracy.

AAC devices now exist that allow users to use head pointers and eye gaze. Our daughter uses a My Tobii, which works solely on eye gaze. She also was able to use a Vantage by PRC which works by head pointing. (The Tobii is easier). 

Since having her device she has gone from answering simple yes and no questions as her main form of communication to writing poems, short journal entries, current events summaries and doing up to 20 math problems at a time. She is doing grade level work for the first time. She can use a screen with up to forty icons at a time and navigate between pages. 

To get this done, we had to file a compliance complaint with our state office of education. They found in our favor: our district refused to provide an assessment (the legal time limit under IDEA is 60 days, they waited 2.5 years by the time we filed) refused to hold an IEP about placement, refused to provide equipment listed in the IEP. These are all protected rights under IDEA. Finally they refused to comply with the corrective actions ordered by the state-- a staggering reaction-- and we got an attorney. 

It took a second mortgage on our house and a lot of beans and rice and oatmeal, but we prevailed. She has a device, a classroom, a qualified AAC specialist and so do five other students in our district. 

Our child was served, but I know of several families in our district who are fighting the same battle. 

Today I am posting new resources related to AAC and AT. These make the difference for many students between warehousing and education. It is worth the fight. It is their right.

I was going to post just once a day but this was far to exciting to pass by. The title is "Drug Trials in Autism."

http://www.technologyreview.com/biomedicine/21748/

Could it be possible that we really are on the brink of a reversal? To hope...

school boards' face the impossible

I attended our local school board meeting last night to hear the latest in heartbreaking discussions of what to cut from the budget. This has been a resounding theme in our district, and many others for several years. Of course, we live in California, a state which, with the 7th largest economy in the world has the worst budgeting process in the world as far as I can tell. Still with our schools in 47th out of 50th in funding, we are still trying hard to reach 51 (allowing Puerto Rico to pass us). 

And our courageous Republican minority is still holding the budget hostage (we have a super majority rule here, so that two thirds of the state legislature has to pass the budget) insisting that they will not, not, not raise taxes. It might, they insist, hurt the economy. 

And it is not just the Republican minority in the state legislature. Parcel taxes in our district have failed the last three times we attempted to campaign. People were buying new SUVs and Wii's and wide screen digital TVs and voting down parcel taxes. I guess all that spending was good for the economies of the companies manufacturing these goods-- like Sony, Toyota and GMC. At least American car companies benefitted from all our spending right? And it provided good jobs, with full minimum wage jobs and no benefits or security for retail workers at good retail outlets. 

But I am confused. 

Our govenor lowered taxes, as promised in his campaign to recall the previous govenor, and the economy does not really seem to have gotten better in the last couple years...

Hmmm. So i want to try and think this through. Cut the budget further and what are the results? More people lose their jobs and can't make their mortgages. More homes go into foreclosure. More banks struggle. There are no jobs right now, so more people need general assistance, medicaid and food stamps, (which are also being cut, in order I guess to stimulate the economy) Shelters and food banks are already overwhelmed so I guess those newly homeless people will just have to live under the bridges, which actually are kind of crowded right now...

so how does all this budget cutting help,  exactly?  Any one?

We have already had, for years, kids going around the neighborhood, standing in lines at the grocery store and at the transit stations begging for donations or selling candy and gum to support music, art, sports, and yes, inconceivably even science programs for school. Every time I see them, I am ashamed. I am ashamed of my community, my state and my country. We should be taking care of this, not them. Why are our children forced to walk the streets begging for money for their schools? That seems fiscally irresponsible. Or some kind of irresponsible. 

I am proud to pay my taxes. I would pay more. The amount of money we pay in property taxes would not even cover tuition for one of my children in private school, much less three. And that tax money is supposed to cover a lot of other things, like 911 services, road building, medical and dental insurance for children...

In the Monty Python lampoon the The Life of Brian, they lampooned the anti-government stance. "What have the Romans ever done for us?" asks one of the revolutionaries of Judea. The others chime in, "Well, aqueducts." The first guy pauses, and says, "Well, besides aqueducts!?" After some arguing back and forth the list comes to include most of civilization: aqueducts, schools, sewers, health care, roads, trade... and so on. And after the long list, the first guy finally says, "Yeah, but besides all that?"

So besides dams and aqueducts, navigable harbors and water ways, vector control, health care for children, the elderly and disabled, k-12 schools community colleges and universities, roads, bridges, street lights, public utilities management, pollution regulation, public safety, fire fighters, ambulances, trauma centers, parks and recreation services, water treatment and sewage, farmers markets, street sweeping... what the heck are we getting for our tax dollars? Yeah, but besides that...

I am proud to pay my taxes and do my bit. I wish to never see another homeless family, another homeless veteran, another mentally ill person soiled and sitting in a doorway, another child with bad teeth or another student begging for money for her school. It would be worth not getting my kids an X-Box for that. Maybe they would even get some exercise and read without one. I wonder what others would give up.  And get. If we did. 

Fund the schools. Some day this generation of kids will grow up. And I don't think they will forget what we did when it was our turn to be responsible for them.

 

Reform what?

With President Elect Obama nominating Mr. Duncan to become the new secretary of education, everyone seems to be talking about reform. I would like to know more about what reforms he thinks are needed, because in education there are reform movements that seek to reform the previous reform movement. Ask any teacher. They will tell you that the trend in education is reform-- always reform. And the pendulum never slows, it simply gathers energy and swings wildly from one side of the pendulum to the other. Duncan has never been a teacher, so as a reformer it may be hard for him to get a sense of how hard this swing is for teachers to manage. 

Working as a teacher and teacher educator for many years, I have learned that it takes time for teachers to learn-- not surprising. They are after all, human like the rest of us and need time to practice complex things in varying conditions. I have seen reforms come in under one principal, with enormous amounts of effort and money following, only to be swept away after a year or two by a new administrator, new board, new idea. And the reform that had just begun to flourish is buried under some contrary idea. 

What I would say to Mr. Duncan and Mr. Obama is this: be smarter than the previous guys who did this. Don't throw out the baby with the bath water. Look not only at what has not worked, but what is working. Scale up what is working. Keep listening to all sides, get the big perspective. Use the really great work that the Institute for Educational Sciences (IES) has done to research what works. 

The biggest problem with No Child Left Behind is that it has turned our schools into dreary places where "reformers" come in and make sure every teacher is "covering material" at the same time, lockstep, documenting those who are not on the pacing guide-- even when they slow down to make sure their students are learning. Many teachers have left schools because, as one told me, I was being asked to do things to my students that I felt were wrong. One teacher explained that the "reform" consultant who came to their school suggested that they stop teaching writing until reading scores came up. WHAT? 

That is not reformed education, it is deformed. 

Talent matters in education, Duncan said. I could not agree more. He should start by looking inside our own country at some of the best and brightest that are here, doing good work that has nearly been shut down under My Child Left Behind. 

genetic basis of autistic behavior?

I have often wondered about much of the psychological interpretations and therapies suggested for my daughter's autistic type behaviors. Though they are more politely couched, they are not far removed from the refrigerator mother theories-- that autism was a psychiatric disorder caused by the mother's rejection of the baby during pregnancy. Reading an article today about the behavioral impacts of mutations on the MecP2 gene made me more curious than ever. (Science Daily Sept. 26, 2008. Mapping the Nueron-behavior Link in Rett Syndrome.)

Vouchers to Where?

Education Weekly reported that a voucher program for special education students failed to pass the state legislature this week. Few states have voucher programs for special education students. With good reason. 

Part B of the Individuals with Disabilities in Education Act (ADA) already requires schools to provide free and appropriate public education for students (often called FAPE in legal speak). If districts do not have such programs, they are required to create them, or pay for education in an appropriate setting. There is no need for a voucher program. In fact, the voucher program may do more harm than good for special education students, in much the same way that it may for general education students. 

Most settings outside of public schools are Non-Public Schools or agencies, and receive federal funds and are therefore subject to the regulation under IDEA and the Americans with Disabilities Act (ADA). Private schools often do not receive federal funds and therefore are not subject to these regulations-- in short, students may lose some of their constitutional protections in these settings. 

Similarly, the voucher could release the school district from its responsibilities to follow the student in alternative placements (currently a responsibility for students in Non-Public School placements under IDEA) and provide related services such as speech therapy. This is currently the case under California law, if parents choose to remove a student from public schools without the school's agreement to place them voluntarily in a private school setting, the school district is released from its responsibility to provide services to the student.  If the voucher does not cover all the students needs, will the district ensure those are met?

And which students are going to be able to use these vouchers? Very, very few private schools are able to serve students with special needs. Most do not have teachers certified in special education or aides for students. Since they do not receive federal funding, they do not even have to comply with the Americans with Disabilities Act. Those that do are almost always Non-Public Schools that serve special education students and do not require vouchers. So, as with regular education students, the voucher system will allow the highest performing students to attend private academies at public expense, drain much needed funds from a system already nearly abandoned by the wealthy and leave behind the neediest students with less funding and fewer resources. 

Vouchers are another appeal to communities-- to us-- to turn our backs on the greatest public good ever imagined-- free education available to each and every citizen-- and create separate and unequal education systems that reinforce our deepening class divide. Vouchers are a cynical tool to further undermine public education by transferring public funds to private businesses.

Public schools are ours. They were built by our parents and grandparents and they belong to us, our children and our grandchildren as an inheritance and a legacy. Once, our schools were the best in the world. They can be again if we want them to. We own the properties. The employees work for us. Go to your local Board meetings. Join your PTA. Take back the schools and invest in your children, your community and your future.   Vouchers will lead our country no where. 

My Child Left Behind

 Every year, my aphasiac child sits on Santa's lap, and when the man asks what she wants, I always say her wish first, then mine: a Cinderella doll (or an Elmo doll or a Blues Clues book or...) and a cure for Rett Syndrome. It is a cheap shot I know, but I still childishly hope that the Big Guy has a direct line to a power greater than me and NIH. But until the cure comes, and just in case it doesn't, what I really wish for is more people to greet us in the supermarket, more invitations to join the PTA, more community organizations with ramps, more day cares that serve children like mine, more cool teenage girl clothes that fit over diapers and leg braces and more sleep . And for Special Education to finally be put on the "nice" list. And for Congress to finally, finally fund special education the full amount as originally conceived in IDEA, finally leaving only sixty percent an unfunded mandate and really leave no child behind-- even those that cannot keep up. With an education, someday my child may be running this blog, instead of me.