This post references an article from back in May in the Herald Tribune, but the topic is as timely as ever: Have you ever visited your child’s classroom and noted that the aide your child most liked is long gone, and that there’s at least one new aide, if not two?

The Herald Tribune notes that there have been at least four substitute teachers for students in a special ed class, after their teacher was arrested on allegations of child abused in February. The article comments on the high turnover rate of special education teachers:

The turnover rate among special-needs teachers is one of the highest in the profession, with Florida losing about 14 percent of the educators in this area each year.

The high stress of the job, along with what teachers say is limited support and resources, drives people out of these classrooms.

The annual attrition rate for special ed teachers is estimated to be 8% to 10%, according to the Education Resources Information Center. Over the years, aides have appeared in Charlie’s classroom one day, been gone the next or suddenly and the teacher has been as in the dark as me about why. None of the aides who had been with Charlie and his classmates for the past year (and even two years) went with them to middle school; all the boys have adapted fine to new staff, but it wasn’t easy as first.

Coupled with an autistic child’s need for consistency and routine, a high teacher/aide turnover rate seems to be the last thing needed—-and instead it’s more of a commonplace

In a speech on Monday in Golden, Colorado, Vice-Presidential candidate Sarah Palin noted that, along with energy policy and government reform, “special needs” would be one of the issues she would focus on, should she and Senator John McCain be elected. The September 17th, Education Week notes that Gov. Palin’s reference to “special needs” is followed by mention of curing “our most dreaded diseases.” Here’s what she said:

I’ve told Senator McCain a few things I’ve learned as a senator and as a mom. Ever since I took the chief executive’s job up north, I’ve pushed for more funding for students with special needs. It’s touched my heart for years, especially about 13 years ago with the beautiful addition to our extended family of a nephew with autism. And now, my family and I, we have added special perspective with the birth of our beautiful baby boy, Trig, just four months ago. …

We can join so many American families that know that some of life’s greatest joys sometimes come with some unique challenges. We’re going to make sure that government is on their side too. And part of that effort is going to involve making sure that our most dreadful diseases have our most effective efforts.

Too often, government gets in the way when innovators take on cancer or Parkinson’s or Alzheimer’s to find a cure…our administration will lead the effort to find new treatments and new cures. That’s going to be a commitment in our administration.

Education Week notes that “funding for children with severe disabilities who need specialized care has indeed gone up” during Palin’s tenure as Governor of Alaska—but these are children who “make up a relatively small part of the special education population, however.” Palin did not mention the Individuals with Disabilities in Education Act (IDEA) and instead focused on talking about curing “our most dreadful diseases.” Indeed, as Education Week notes,

The state [of Alaska] does not provide funding to school districts specifically for special education students with less severe needs, but does give an additional block grant to districts that they can use at their own discretion for special education, gifted education, education of English language learners, and vocational education……

Also, the disability advocates I’ve had the opportunity to interview seem to care less about government obstruction, and more about just having enough funding to explore the topics they consider important. One research avenue, federal funding of embryonic stem cell research, is something Palin opposes, as do many social conservatives and President Bush. McCain, however, says he does support federal funding of such efforts. (Skip to question #8)

Curing diseases and living with a disability—a lifelong on, such as autism—-are two different things.

And we only know Gov. Palin’s views somewhat on one.

More discussion of Palin’s views on disability (not on “dreadful diseases”), and also on Obama’s, can be found here.

Vice Presidential candidate Sarah Palin on the issues she intends to focus on should John McCain and her be elected in November, from Jonathan Martin’s blog on today’s Washington Examiner:

“John and I have worked out a plan, what I want to concentrate on and what he would like to kind of tap into me to help with,” Palin said at a rally just outside Denver this morning. “My mission is going to energy security and government reform. And another thing near and dear to my heart, it’s going to be helping families who have special needs and children with special needs. And we’re going to be pushing for innovative cures for diseases.”

Martin notes that Palin has a child with Down Syndrome and an autistic nephew.

From her statement, it seems that she views whatever conditions fall under “special needs” as diseases (including, one may infer, autism) and hence is speaking about “cures.” What “innovative” means, is much vaguer.

I blogger earlier today about Palin and the broader disability community and noted in particular her “dismissive mockery of community organizing and its portent for the disability community,” as stated in a guest post by the directors of the Beach Center on Disability in Kansas. For more on Palin’s saying that she plans to be an “advocate” for those with special needs, see today’s Body Impolitic, which also refers readers back to an April analysis by disabilities scholar Michael Bérubé on the topic of Obama and Clinton and disability, and on notions of accessibility and truly understanding the world from a disability perspective.

The September 13th St. Paul Pioneer Press notes this about Vice-Presidential candidate Sarah Palin’s “track record” on spending for special needs:

In the budget she signed into law earlier this year, Palin approved a dramatic raise in spending on children who have what Alaska officials call “intensive needs,” including children who need nurses full time or cannot breathe without ventilators.

When Palin took office, the state was spending $27,000 a year on each such child. The budget she signed this year raises funding to $49,000 per child. In three years, the amount will rise to $74,000, roughly equal to the $75,000 a year cost of educating such children.

The public school teachers union in Alaska, the National Education Association-Alaska, has lauded Palin’s action, although it has not endorsed her.

Several other disability programs received increases. Since she became governor in 2006, she has nearly doubled state spending to combat fetal alcohol syndrome and increased spending on adult mental health services by 59 percent. She also has shifted about $1.25 million in state money to faith-based programs that provide social services.

Regarding Governor Palin’s position on education, and special education, more specifically (the “intensive needs” of the children noted above seem to be more strictly medical), is an article from the August Education Week about the education funding bill signed by Governor Palin in March. While Alaska “[u]nlike many other states, ….. has relatively flush budget coffers, thanks to a rise in oil and gas revenues,” funding for schools will still be “fairly level next year”:

This plan enacted in the recently concluded session of the legislature, is based on recommendations issued by a legislative task force last year. It will phase in a greater flow of money to districts outside of Anchorage, Alaska’s largest city, over the next five years.

Advocates for rural and remote schools have lobbied for years for more funding, in particular noting the higher fuel, transportation, and other costs associated with providing education in communities scattered across the vast state.

A second part of the measure raises spending for students with special needs to $73,840 in fiscal 2011, from the current $26,900 per student in fiscal 2008, according to the Alaska Department of Education and Early Development.

Unlike many other states, Alaska has relatively flush budget coffers, thanks to a rise in oil and gas revenues. Funding for schools will remain fairly level next year, however. Overall per-pupil funding across the state will rise by $100, to $5,480, in fiscal 2009. Total K-12 funding will rise to $1.2 billion from $1.1 billion, when transportation, energy, and other state funds are included, according to estimates from the governor’s Office of Management and Budget.

If you go to the link about the K-12 Education Funding Plan, you see this. After costs for fuel, transportation, and the like, how much of the increase is meant for training of teachers, facilities and classrooms, staff:student ratios?

The St. Paul Pioneer Press refers to President John F. Kennedy’s sister Rosemary, who had intellectual disabilities, and interviews Anthony Shriver, whose mother, Eunice Kennedy Shriver, founded the Special Olympics.

“The more advocates there are for children with special needs, the better,” said Anthony Shriver, founder of Best Buddies, which has raised money and provided services for children with such disabilities for 20 years.

But he is somewhat skeptical about Palin and the GOP.

“Historically, Republicans haven’t been that interested,” Shriver said. “To have an advocate in the Republican Party is a new twist and welcome addition.”

Shriver noted that last year, his sister, California first lady Maria Shriver, sent letters to the nation’s governors, including Palin, asking them to employ people with intellectual disabilities. Gov. Arnold Schwarzenegger has made two such hires. Palin replied that she would refer the matter to an aide and did not commit to making a hire.

In Anthony Shriver’s view, Palin acted “as if we don’t need anybody’s help — thanks but no thanks. … She kind of blew us off. I’m glad she has had the conversation.”

Go here to read about Presidential candidate Barack Obama’s support for fulling funding IDEA, and here regarding his support for Americans with Disabilities Act (ADA) and about the employment of persons with disabilities.Patricia E. Bauer say this on her website about disability news and advocacy:

Some parents of children with disabilities are enthusiastic over Gov. Palin’s pledge of support, but advocacy on behalf of the disability community has not been “a centerpiece of Ms. Palin’s 20-months in office or any of her campaigns for office.”

“I never heard Governor Palin say as governor, ‘You have an advocate in Juneau,’ ” said Sonja Kerr, a lawyer specializing in disability law in Anchorage.

A spokeswoman for Palin would not elaborate on her decision to give disability issues prominent placement in her acceptance speech.

John McCain has voted against increasing federal special education funding, and also opposes legislation that would help states move people with disabilities from institutions into community living arrangements.

From a guest post by the directors of the Beach Center on Disability in Kansas:

When a young governor line-item vetoes six appropriations for community disability services or for accessibility modifications to public accommodations, that governor gives us reason to be skeptical about promises and prospective performance. When the appropriations totaled $749,000 in a state that has a huge budget surplus, and when the governor apparently knew at the time that her nephew has autism, that governor gives us special reason to doubt her commitment to people with special needs.

Yes, state funding for “intensive special needs children” in Alaska increased for Fiscal Year 2010. But it is not yet clear exactly who those children are, how many of them are the intended beneficiaries of the appropriation, and precisely what role the governor had in proposing the appropriation or influencing the legislature to appropriate the funds.

In a word, Gov. Palin’s record on disability leaves us with our doubts about her promise.

It also prompts us to concentrate on the governor’s dismissive mockery of community organizing and its portent for the disability community.

The truth is that community organizing benefits people with disabilities.

And another voice from the disability community, Erika J., on Disability Nation, where she writes about Palin as the center of controversy for the disability community and about Palin and adults with disabilities.

Hillary Clinton mentioned autism in her speech at the Democratic National Convention and, last night, Bill Clinton did too (”I will never forget the parents of children with autism and other severe conditions who told me on the campaign trail that they couldn’t afford health care and couldn’t qualify their kids for Medicaid unless they quit work or got a divorce”). Will Obama; will McCain……..

Just after the introductory section of her speech at the Democratic Convention (transcript), as her first example of her “35 years in the trenches, advocating for children, campaigning for universal health care, helping parents balance work and family, and fighting for women’s rights here at home and around the world,” Hillary Clinton said:

I will always remember the single mom who had adopted two kids with autism. She didn’t have any health insurance, and she discovered she had cancer. But she greeted me with her bald head, painted with my name on it, and asked me to fight for health care for her and her children.

Comments Wonkette who liveblogged the Senator’s speech:

A single mom, two kids, autism, cancer, painted bald head…This is the most tragic woman in America, and Hillary Clinton found her.

Single mom (with cancer), two adopted kids (with autism): Not easy. But not so sure about rushing to judge this woman as “tragic.” Has referring to the parent of an autistic child become a shorthand way to show a certain, perhaps, compassion for those in need?

After a priest filed a restraining order against the parents of 13-year-old Adam Race back in May, there was a lot of (often very heated) discussion about the exclusion and inclusion of autistic individuals in public spaces. The August 22nd Morning News reports on The Point at Bella Vista, a church meant for families with a relative who has special needs. Ginny Thornburgh, director of the American Association of People with Disabilities Interfaith Initiative in Washington, notes that

“the trend is to acknowledge the gifts and challenges children and adults with disabilities bring to the congregation…….. All people of all faiths have a right to be honored and welcomed - a right to worship, study, serve and learn.”

Hope that this is a trend that will certainly continue.

Go here to read about the Interfaith Disability Connection.

This Associated Press story about autistic children and disruptive behavior has been making the rounds of news outlets and websites—-Jen Miller of Tacoma, whose daughter is autistic, writes this in the News Tribune:

….it’s funny how easy it is for some to complain when they haven’t walked a day in an autistic parent’s shoes.

Miller refers to a number of instances of autistic children whose “disruptive behavior” has been the subject of more than a little public discussion and judgment and reminds us, you just never know what might be going on.

In the ocean this morning with Charlie, I noted a boy about his age looking more than a few times in our direction. Charlie’s a super swimmer, and clearly comfortable in the water, and still has to have someone out there with him. This morning it was me. The waves were perfect—big but soft and just a bit cold—and Charlie was vocalizing his excitement, though not in words. After the other boy had looked in out direction a few times, I smiled and said, “Charlie’s autistic.”

“Yes, my friend has a brother who has that,” said the boy. I asked how old he was; the boy said he was ten, same as himself, and that “all he does is play video games and beat people up.”

“My son doesn’t do either of those,” I said, quickly, and glancing around to see where Charlie was swimming off to. “I mean, a lot of kids like to play video games, but not the beating people up.”

The boy was in earnest and added, “He’s mainstreamed, too. He’s in fourth grade. They had to hold him back a year.”

At that point Charlie was clearly swimming beyond the lifeguard’s orange flag and I hurried off. The boy and another boy, both on boogie boards, floated several times near us and in and out wherever Charlie was going.

The beach is big and the waves themselves are loud. I’d say it’s a place where there’s room for everyone, “whatever” they are (on the first day, we realized that another family on the beach had an autistic son, an adult). There’s still rules—those orange flags to swim between, and not swimming near the jetties or near a fishing pole (Charlie attempted to do both this morning). One reason we like to vacation at the beach is because it is a place where Charlie can pretty much do what he likes a lot, get in a lot of exercise, not have to worry about waiting in lines for rides as we would at an amusement park. Being able to rent a house rather than a hotel room means there’s plenty of room for him to run around and stomp (and we have our own washing machine…….). Souvenir shopping and going to arcades aren’t of interest to Charlie, and the ocean and sand are pretty much the main attraction.

So, we try to seek out a place where Charlie can be himself, in public spaces too, and get ready to play the parent activist at certain moments when a boy taller than his mother who speaks partially in sounds rather than words attracts attention and can be considered disruptive. The August 13th Associated Press has an article about the disruptive behavior of autistic children striking a furor; some cases of autistic children—Adam Race; Alex Barton—being excluded are noted. Is there a limit to how much “understanding can be gained in grocery stores, churches or other public places”? If parents go out of their way to make accommodations and preparations when taking a special needs kid out in public, maybe these are first attempts to help a child learn to be in public places, and to seek the beginnings of understanding.

Maybe—at least they’re ways to get a conversation about autism going.

Compassion Deficit Disorder is the title of an August 7th article by writer Judith Warner in the New York Times. Starting with Michael Savage’s over-the-top claims that autism is incorrectly diagnosed in 99% of cases and that it’s just a way to seek “undue sympathy, victim status, and services” for autistic children, Warner writes in the next paragraph about comments by Rick Davis, Senator John McCain’s campaign manager, last week about Barack Obama as

….[playing] “the race card” by noting that Republicans appeared to be trying to suggest to voters that the Democratic candidate “doesn’t look like all those other presidents on those dollar bills.”

There’s a perception—amorphous and not fully acknowledged—out there, Warner writes, that certain kinds of “differences,” of “gender, race, class, status and ethnicity” and also of disability enable some and certain individuals to have advantages, to be given preferential treatment. College admissions are Warner’s particular focus, as she refers to a conversation with her niece, an “incoming senior at a large, suburban high school in the Midwest”:

Her classmates, she said disgustedly, seem to view the college admissions trials as an all out game of war, waged by combatants who are perennially flipping cards of gender, race, class, status and ethnicity, ready to cheat if they don’t like the luck of the draw. Some students, she noted, managed miraculously to discover their non-white ancestry just days before they had to check off their race on admissions forms. These same students had spent their junior years bashing Hillary Clinton for “playing the gender card” (the oft-repeated phrase.) They bewailed the terrible unfairness of a college application system that, they believed, gave unfair advantage to racial minorities and students from economically disadvantaged homes.

Admission into college, and into certain highly selective, elite, Ivy League sort of colleges has become so competitive that students who are, Warner writes, “mostly white, mostly comfortably middle- or upper-middle-class,” feel disadvantaged as college admissions officers brush aside their applications in favor of students who, well, are not. Warner speculates that these students, and, too, the likes of Michael Savage and some campaign managers, all have a sort of “compassion deficit disorder”:

To accuse someone of playing some sort of card — race, gender, or whatever — is to assume they’re trying to take unfair advantage and to assert that they have no genuine right to express a grievance or even to mere self-assertion. That such accusations have flowed so thick and rich in the past year of presidential campaigning and now circulate unquestioned among our next generation of college students, reflects two realities: one is the degree to which the meaning of the historical battle of America’s long-discriminated-against populations has been corrupted, and the other is the degree to which everyone seems to feel that the deck is stacked against them.

The comments following Warner’s article were typically revealing, with numerous remarks about the unfairness of the college admissions process, some about autism being diagnosed and one (#195) in particular about Asperger Syndrome being a diagnosis “overused by parents wanting to have a label that will provide privileges and special services for a child who is bright but what we used to call ‘nerdy,’” and much more.

On first reading all this—especially what could be called the hand-wringing about college—I felt a bit impatient. Charlie’s educational challenges are far beyond worrying whether he won’t get into Yale; we’d have a major party if he read a few words in a book and I don’t mean anything by James Joyce. At this point, Charlie’s most likely not going to college. Jim and I are both college professors and have too good a sense of what Charlie would have to do to get through freshmen year, let alone the rest. Charlie most certainly does not have to attend college (or get himself mainstreamed) to make me feel proud of him; really, it’s beside the point. It’s a cliché, but raising a kid like him gives you mounds of perspective about what’s really important, and being able to wear a “Harvard parent” sweatshirt and put those stickers on the back of the stationwagon matters—-not.

In the interest of “full disclosure,” I will note that there’s a couple of cards I could play, or maybe that someone played for me when I was applying to college over two decades ago. I’m (1) female and (2) Chinese American, third generation, and I made sure to do all the kinds of things students today do to look like Top College Material: played musical instruments, competed in musical competitions, played in youth orchestras, ran cross country, won races, sang in the chorus (though I can’t sing), studied three languages. Et cetera. Further disclosure: I went to an Ivy League college, and then Ivy League graduate school, and then—-two years after I’d gotten my degree—-had a little boy who put me on the path to the hardest educational challenge I’ve ever faced. It’s not been easy, but it’s the truth that raising Charlie and trying to understand him has been the best learning experience I’ve ever had. I never sought admission and at times I’ve been an unwilling student. The cards that I’ve learned to deal have not been “playing” cards as much as flashcards, and Language Master cards to prompt Charlie to talk, and cards fastened to his backpack so he’ll know what his bus and locker numbers are, and the card I slip into his pocket that says “My name is Charlie—I have autism—please call my mom and dad IMMEDIATELY.”

Out of all the comments on Warner’s article, this one stood out to me the most was #44:

I am a Emergency Medical Technician in Jersey City New Jersey and a father of a Autistic child. Most of the children I treat for ashma [sic] are poor. My son, well he is autistic. Neither one of my jobs are “frauds”, please, get real.
Bill Bayer
— Posted by William Bayer

The college where I work is in Jersey City, which is the most ethnically diverse city on the East Coast. My husband Jim and I would love to live in Jersey City but the services for a kid like Charlie aren’t the same as they are in the suburbs, and so that’s where we live. Many of Jersey City’s residents are immigrants; the schools have all the problems of schools in a large, very urban, school district. It’s nice to be able to fret about college admissions. It’s necessary to “get real” and see who really has real needs, and where the compassion needs to be.

What would be the Ritalin equivalent for “CDD,” should one be sought……..