AN EASTER LESSON

Today is Easter Sunday. This morning, I started thinking back to years past when my mother, Betty “Big Mama” Rankin, hosted the Moldy Fig Jam every Saturday morning on WWOZ radio. She showcased the best of traditional New Orleans jazz, and did so with love.

On the day before Easter, she always threw in a heaping helping of hymns played in the New Orleans style, and she saved a little time to play some Mahalia Jackson. For Big Mama, it made sense to pay tribute to the Lord by sharing one of the most glorious voices He ever created—a native voice that bridged the gap between the sacred and the secular souls. Playing Mahalia also educated the listeners as to the roots of the jazz they so loved.

So every year Big Mama played some Mahalia, and every year, like clockwork, some ignorant jerk would call the station and complain. Typically, the faceless voice on the phone would declare that if he wanted to hear that $&@ gospel !*%#, he would tune in the next day to hear the gospel show; he wanted to hear real jazz.

Big Mama was not the kind of person who could easily shrug off the meaness of others. She always left the studio in tears. But within hours her tears of sadness would turn to … well, not exactly anger; I’d call it determination. She’d immediately start planning out her Easter show for the next year. And there would be one more Mahalia Jackson song than she played that year.

I learned a lot from my mother.

Happy Easter.

IS THE MEDIA FINALLY CATCHING ON TO THIS GUY?

For years, I’ve had a love-hate thing for Dr. Paul Offit. As a blogger, I loved the fact that he always seemed to come to my rescue when I couldn’t find anything to write about. As if on-cue, Dr. O would say something outrageous and a blog post would practically write itself.

On the other hand, as a parent, I grew so weary of what I perceived to be his arrogance and cavalier attitude toward the victims of the autism epidemic. Beyond all else, though, I have constantly wondered why the mainstream media kept buying the bill of goods this disingenuous salesman was pushing.

Now it seems that someone is catching on.

Back in August, 2008, the Orange County Register allowed itself to be used as a conduit for Offit’s rage directed at Sharyl Attkisson of CBS News, one of the few journalists who was willing to look beneath the surface of the vaccine safety issue. This week, though, the Register (at least in its on-line version) ran a “correction,” having found that “it appears that a number of Dr. Offit’s statements … were unsubstantiated and/or false.”

Specifically, the Register stated:

Unsubstantiated statements include: Offit’s claim that Attkisson “lied”; and Offit’s claim that CBS News sent a “mean spirited and vituperative” email “over the signature of Sharyl Attkisson” stating “You’re clearly hiding something.” In fact, the OC Register has no evidence to support those claims. Further, Offit told the OC Register that he provided CBS News “the details of his relationship, and Children’s Hospital of Philadelphia’s relationship, with pharmaceutical company Merck.” However, documents provided by CBS News indicate Offit did not disclose his financial relationships with Merck, including a $1.5 million Hilleman chair he sits in that is co-sponsored by Merck. According to the CBS News’ documentation recently reviewed by the OC Register, the network requested (but Offit did not disclose) the entire profile of his professional financial relationships with pharmaceutical companies including: The amount of compensation he’d received from which companies in speaking fees; and pharmaceutical consulting relationships and fees. The CBS News documentation indicates Offit also did not disclose his share of past and future royalties for the Merck vaccine he co-invented.

Better late than never. It will be interesting to see if anyone else in the mainstream media takes note.

For Ginger’s take, and a peek at the CBS story that led to all this, go here.

HERE’S SOME “AWARENESS” FOR YOU. IT’S GONNA COST SOMETHING.

So here we are again: that time of year when everyone talks about “autism awareness.” It too often means making useless gestures, like putting in a blue light bulb. Sometimes though, it takes the form of a good, two-way discussion with a good friend. I had such a discussion, albeit via electronic means, with an old and very valued friend. Let’s call him “Bob” (mainly because his name is Bob).

It all started with one of those Hitler videos. You know the ones I’m talking about. They show up from time to time on You Tube. They all use the same footage from a movie, taking place in World War II, called The Downfall. Hitler is meeting with his military staff, and the staff breaks some bad news to the Fürher. That scene took on a whole new life when people with nothing better to do in their life started adding their own subtitles, placing the scene in different contexts (e.g., Hitler finds out Michael Jackson died and won’t be at his birthday party; Hitler gets banned from Wikipedia; etc.).

A recent version (go here because embedding is disabled) places Hitler in the role of a school district’s special-ed coordinator, meeting with his staff to plan their role in an upcoming I.E.P. meeting. He starts discussing the program they will foist upon the unsuspecting family, and the staff breaks the news that the parents are demanding an outside placement to meet the child’s needs. Worse yet, some of the staff members appear to agree that the outside placement is necessary.

It all sounds so familiar to far-too-many of us. Our children need particular help to truly receive a “free and appropriate public education,” as guaranteed by the Individuals with Disabilities Education Act (IDEA). But programs like that cost money, and so some districts instead try to throw kids into a one-size-fits-all program to partially address the needs of a lot of kids who sort of have the same needs. It seems like all they’re really trying to do is shut up parents for a while until it’s too late to do anything.

I did what so many of us do when we see stuff like that; I posted it to my Facebook wall. And that led to a conversation with Bob, who is the kind of guy who knows that good friendships not only survive spirited debates, but thrive on them.

Bob is a computer networking professional, who works with the special-ed folks in an area that takes its IDEA responsibilities very seriously. They apparently do some very innovative things to actually serve kids with special needs.

From his perspective, Bob thought the video painted with too broad a brush. Like me, he was viewing the satire through the lens of personal experience. Based on conversations with parents from across the country, though, I have to say that my experience may be closer to the norm.

That is not the fault of the professionals who work with our kids on a daily basis. Most of them want to see more done. Rather, the blame is shared between the federal government, the school districts who are responsible for carrying out IDEA, and most of all, the well-intentioned but poorly defined mandates that IDEA sets forth.

I can certainly understand that viewing the Hitler/I.E.P. video, if taken on its face, can lead one to the conclusion that an invidious comparison is being drawn between special-ed coordinators and the personification of evil. On that level, it can be called unfair. I have yet to meet any district representative who doesn’t seem like a nice person. This video, though, resonates with me as an expression of frustration with a system that tends to drive a wedge between people that might otherwise form a useful partnership.

IDEA is a product of the early stages of the explosion of developmental disabilities. Its noble purpose was to guarantee that kids with autism, ADHD, and other problems, could have the same opportunity to receive an appropriate education as any fully-abled child. After it became the law, though, the explosion hit.

The resulting situation is very similar to that described by the special services fürher in the video. The federal government mandated services, without properly funding them. And the response is all-too-often taking the easiest path of throwing together in-district programs that are based on proven strategies but don’t carry though the intensity needed to be truly effective.

That approach ignores the first word in IDEA: individuals. It pays lip service to the concept of “no child left behind,” but in fact, tries to sweep children along until they’re past the age of IDEA’s reach. Those kids never reach their potential; they never have a chance.

Almost as bad, that forces more and more parents, fighting for their individual children, to institute “due process” proceedings, which sometimes lead to court suits. Very rarely do the children get appropriate services during that process, and the districts waste precious monetary resources in the litigation (and make no mistake about it, “due process” means litigation).

To be sure, the opportunities and problems vary from district-to-district. One of the reasons we moved from Louisiana back in late 2006 was to find some place with a better school system. And we found that. But “better” doesn’t necessarily mean “good” or even “adequate.” Had all else been equal, we would have wound up in a place where, like Bob’s locale, the approach to special education is proactive and innovative. Other factors, including career opportunities and, more importantly, access to other medical and therapeutic services, dictated our move to where we are.

My point—and as usual, I’ve taken my own sweet time to get there—is that this country needs to wake up. We are in the midst of a true epidemic. As our kids reach adulthood, without the necessary tools to live independently, more and more financial resources will be needed to support them (which doesn’t even begin to address the tragedy of the impact on them as human beings). We, as a country, need to make a serious investment in appropriate educational services. And if that means spending more to outsource services, so be it.

Just as important, this country needs to take a real interest in the hard questions of just how we got here in the first place.

Stopping this epidemic and dealing with its victims is going to take more than screwing in a blue light bulb and talking about the fact that there’s a lot of autistic kids out there. We need more than a Khumbaya moment.

Autism awareness must lead to action.